October 4, 2025 • 37 mins
A rare diagnosis shattered a young family’s plans—and then reshaped a nation’s approach to caring for medically fragile children. We sit down with Jonathan Cotter to chart the path from his son Ryan’s SMA diagnosis and sleepless nights in London to discovering Helen House, the world’s first children’s respite and palliative care home. What began as a desperate search for help became a blueprint for dignity: overnight respite that restores parents, supports siblings, and wraps families in expert, compassionate care—at no cost.
Back in Arizona, the gap was impossible to ignore. The UK had dozens of children’s respite homes; the US had virtually none. Jonathan and his wife turned their grief and grit into Ryan House, a community-based model with 24/7 nursing, child-life specialists, social workers, and chaplaincy that lets parents be parents again—through hospital scares, small victories, and, when needed, end-of-life moments marked by presence, not panic. Ryan lived years beyond predictions, cracking jokes about being “moldy cheese,” and helped open the doors of the very home that would later hold his final breath.
The story doesn’t end there. After Ryan’s death, Jonathan earned an MPH and launched a national coalition—Children’s Respite Homes of America—to tackle the structural barriers that keep families from the care they need. We dig into the policy levers (Medicaid, CMS, licensing), the funding mix beyond philanthropy, and the expanding map of programs: from Oakland and Phoenix to Minneapolis, Chicago, Seattle, and beyond. If you’re a caregiver, clinician, donor, or policymaker, you’ll hear practical steps to bring this model to your city and a reminder that hope isn’t abstract—it’s built, staffed, and sustained.
Subscribe for more stories that blend heart with hard-won solutions, share this with someone who needs it, and visit childrensrespitehomes.org to get involved or find a program near you. Your voice can help bring real rest—and real hope—to families who need both.
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Episode Transcript
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SPEAKER_01 (00:02):
Well, hello, and welcome back to the Healthy
Living Podcast.
I'm your host, Joe Grumbine, andtoday we have with us a very
special guest.
His name is Jonathan Cotter, andwe just had a nice little
conversation.
Um, and he's got a very uniqueprogram, a very unique life
situation that so many people uhfind their way to this show.
(00:25):
Uh Jonathan has a son that manyyears ago was diagnosed with a
condition called spinal muscularatrophy as an infant.
And um over 17 years, Jonathanand his wife co-founded an
organization called Ryan House,and it's one of the few
(00:47):
children's respite andpalliative care homes in the
U.S.
And really, I just want to openthe door right there because
that is something that we werejust talking about, is a
discussion that really needs tobe had.
Palliative care, um, respitecare and children don't
generally end up in the sameconversation.
(01:09):
Jonathan, welcome to the show.
It's great to have you heretoday.
SPEAKER_00 (01:12):
Joe, wonderful, wonderful uh opportunity.
I appreciate the chance to get achance to talk.
This is great.
SPEAKER_01 (01:18):
Absolutely.
So you have a very, very uniquestory.
And um, I I always like to givea guest a chance to kind of tell
us about how you got here.
And why don't you tell us alittle bit about that experience
raising a son with thiscondition?
And um, you know, it's it seemslike a very interesting and
(01:39):
important story.
SPEAKER_00 (01:40):
Yeah, I appreciate that.
Um, so uh the other thing, youand I discovered we're about the
same age, too.
So um we kind of have the samegeneral life experiences.
In my case, my wife and I um areArizona family, so I'm I'm
talking to you out ofScottsdale, Arizona right now.
Um, we've been married for over33 years.
When we got married, uh mycareer was in marketing.
(02:02):
I worked for brands that youknow and love.
So I started my life at the DialCorporation on Dial Soap.
Um, my wife was a schoolteacher.
We went off to see the world.
After a few years of marriage,we moved to Green Bay,
Wisconsin, and I worked forBriars Ice Cream.
After a couple years, we movedto the Twin Cities and the
Pillsbury Company.
Wow.
Um, and I at that point was asenior marketer.
(02:23):
We loved living in the TwinCities.
That's where we had our firstson, Ethan, who's now 27 years
old.
Uh, he's a bassist in the deathmetal band, so that'll be a
story for another day.
Uh, and it was in um inMinneapolis that the Pillsbury
Doughboy gave us the opportunityto go to London, England and do
a job assignment in London.
(02:44):
So that's where we went afterthree years in Minneapolis.
We moved to London for threeyears.
Uh, and after landing there, wedecided to continue our family.
And so our young son Ryan wasborn, and that's the really the
story that we'll talk more abouthere today.
Um, Ryan was our second son,beautiful birth.
We were already parents, so weknew about toddlers and diaper
(03:05):
changes, and we thought we hadthis down.
Um, and at eight months old,Ryan actually, the the the
important thing is that wethought he was a late bloomer.
He was a perfect baby looking 10fingers, 10 toes, perfect apgar
score, but something just wasn'tright with him.
He just didn't have anystrength.
(03:25):
He wasn't sitting up umunassisted, holding his head up
like our other son, who waspractically running at 10
months, was doing.
And so my parents had come overfrom Arizona to visit us for the
holidays.
And my mom held Ryan for thefirst time, immediately teared
up and said, I'm so sorry.
(03:45):
Looked at my wife and said, I'mso sorry.
And that was the confirmationthat, okay, something just is
not right here.
My mom, you know, I have threesisters.
My mom was used to babies, andso that was really the trigger
that put us on the road todoctor visits and specialists.
And that's when we were giventhe diagnosis of spinal muscular
atrophy, which turns out it's arare genetic disease.
(04:07):
I'm a carrier, my wife is acarrier, and it just the odds
play out.
Wow.
And this was 20 21 years ago.
He was born in 2001.
Um, and at that time, SMA had notreatments and no cures.
Uh, and we were basically toldRyan was eight months old, don't
expect him to live to two, andthere's nothing you can do about
(04:29):
it.
SPEAKER_01 (04:29):
Wow.
SPEAKER_00 (04:31):
So our world was shattered, and we were 11 hours
away from the closest familymember, all back in Arizona.
My wife is from Tucson, Arizona,born and raised.
And so it just literally wasdevastating news to hear.
Um, and that's kind of, youknow, obviously was grief and
how is this happening and whatare we going to do about all
this stuff?
And at that point, Ryan's carereally was starting to get much
(04:54):
more intensive.
We started to, you know, it'scalled spinal muscular atrophy
for a reason.
We needed to start to do a lotof physical therapy with Ryan to
try and keep his joints loose sothey didn't just stiffen up his
legs and his arms.
He wasn't able to kind of brushhis teeth, or or I mean he was
only eight months old at thispoint, but um, he he needed a
(05:14):
lot of attention.
And he we found ourselves in thehospital quite a bit because he
was getting pneumonias.
His body wasn't able to get goodbreaths, so he would get colds
more frequently.
And so um, the other major pointwas this was his care became
intensive 24 hours a day, sevendays a week, which includes the
evenings.
(05:35):
So, where most of us, when wesleep, we wrestle around a
little bit to get comfortable.
Ryan couldn't do that.
Ryan, you put him on his back,and 45 minutes later or an hour
later, he would cry out becausehe needed to be changed
position.
So either my wife or I had to gointo his bedroom, flip him on
his side, 45, try and go back tobed.
Um, 45 minutes later, an hour,he'd cry out again.
(05:57):
One of us would go to his room,flip him on his other side.
And so we always trainedourselves to kind of live on
very little sleep, or we werealways on guard and always
alert, and it just becomesincredibly exhausting.
unknown (06:09):
Wow.
SPEAKER_00 (06:10):
Plus, you have this um, and and this is I think
where you and I all end uptalking a lot too, is that this
idea that not only was hismedical care and his caregiving
needs intensive, but you alsohave this cloud and umbrella
over this whole thing, which wasreally the emotional journey
that we now found ourselves on,because there was no treatments
(06:31):
and no cures and a lifeexpectation that he won't live
to two.
And how do you find joy?
How do you live life trying toreally um deal with all the
medical caregiving needs of theday, but also just try and find
joy when you're also trying tothink about should I be planning
for funerals?
Should we be planning a death?
How do we, and so that's what'scalled anticipatory grief.
(06:52):
And then that really kind ofgets into this bigger idea of
palliative care support, whichis really just beautiful and
wonderful and helping familiesand people thrive throughout the
lifespan, adults, kids,everything, just about how do
you kind of go through journeyslike this, especially when
they're kids?
SPEAKER_01 (07:10):
So you know, hope is such a powerful word.
I know, you know, I'm overcominga very aggressive cancer right
now.
And in my journey, I found aplace where I said I can fix on
this hope of okay, if I it's asolvable problem, all I gotta do
is find the answers and do thehard work.
And I have hope.
(07:33):
And so, was there anything outthere?
I mean, I'm I'm sure you weredoing research and meeting
people, and you've probablydedicated your whole life as I
did to we gotta see if there'ssomething out like you just
because they say there's no hopedoesn't mean that we give up,
right?
SPEAKER_00 (07:48):
Oh, yeah.
Well, I mean, I think that umthe I've been around now.
This was, you know, Ryan died atthe age of 17 and a half years
old.
He did survive his secondbirthday, then a third birthday,
then a fourth birthday, and thekid kept going.
If he was here joining ourconversation, he would describe
himself as moldy cheese, waypast his expiration date.
The kid was cheeky, he waswicked smart, mature beyond his
(08:10):
years, very verbal.
You couldn't shut the kid up,but he was very physically
challenged.
So at 17 and a half years old,when he died almost seven years
ago now, he was using a powerwheelchair for mobility.
The computer that you and I aretalking on is a gaming computer
that he and I built together.
Um, so he was very active and hehad a joyful life, but it was
very challenging.
(08:31):
But in those early days, rightwhen we were talking about hope,
um, I believe that families whohave children that are impacted
with medical fragile conditionsor rare diseases like this that
are not expected to live longlives, the number one thing that
those families want more thananything in the world is a cure
for their child.
That's what they hope for.
(08:51):
They'll give anything to curetheir child.
But then what you realize isthat sometimes there are
treatments and sometimes thereare cures.
In our case, there was none ofthat available.
But we had we got to save moneyor we got to raise money, we got
to find a cure, we got to chasethis thing.
And then what you realize is youalso need sleep.
Right.
And that I believe that thesecond thing that these families
(09:12):
need more than anything issleep.
And that was really the um, Ithink the thing that we quickly
realized is as we were reallystruggling with our day-to-day
lives now, the physicaltherapist that was helping us,
and we were now seeing veryactively when Ryan was young in
England.
Um, that person referred us to aplace called Helen House, which
(09:34):
is the world's first children'srespite, palliative and hospice
home.
And it was started in 1982 inOxford, England, which happened
to be 45 minutes up the roadfrom us from where we were
living in London.
SPEAKER_01 (09:45):
But it's the very first one was only put together
40 years ago.
SPEAKER_00 (09:50):
Exactly.
Yeah, this whole this wholehospice care and palliative care
concepts really started inEngland.
That's kind of the mothership ofall of this kind of care.
It has expanded over, certainlythrough adult care and hospices.
I think most people are familiarwith end of life and hospice
care for adults, but forchildren, it really is only 40
years young and it reallystarted in England.
unknown (10:12):
Wow.
SPEAKER_00 (10:13):
But it was it was described to us as a children's
hospice home.
And so, with those words andbeing very scared and trying to
find hope, my wife and I reallyrejected that whole concept
right a very right away.
And we said, we're not goingthere.
Um, we need that's death, that'sdying, that's giving up.
We need to find hope, we need tofind a solution to this.
(10:34):
And the the physical therapistjust kept referring to response,
right?
Yeah.
And the physical therapist justkept reinforcing to us it's a
place to support your familyalong these very difficult
journeys with overnight respite,which is a true break.
We will care for your child sothat mom and dad can truly
sleep, um, and that it haspalliative care support, which
(10:56):
it means that the team isinterdisciplinary.
Not only does it have nurse,it's a basically Helen House.
When we finally agreed to go, itwas a warm blanket of love.
It was absolutely not what weexpected.
We thought it's not a hospital,it's not a nursing facility.
It was truly a community-based,very large home with eight
(11:16):
children's bedrooms and threefamily suites and then specialty
rooms.
Uh, and so when we walked in, weimmediately felt our shoulders
come down.
We immediately felt, okay, we'rearound people that get it, that
understand this journey thatwe're on, because it's just you
don't see families like ours inout at restaurants and in movie
(11:37):
theaters because we're at homewith so much care needs.
SPEAKER_01 (11:40):
Right.
So, was there like a momentwhere like obviously you went
from we're never gonna do thisto well, maybe we'll go visit.
Was there something thathappened that caused that break,
or just you just finallydesperation and exhaustion?
SPEAKER_00 (11:53):
And we finally, it just the the physical therapist
was just relentless in herreferrals, and we finally said,
All right, stop bugging us,we'll go check it out.
Right.
And when we did, like I said, awarm blanket of love, it really
felt like we were in a placethat that felt very comfortable
immediately.
We stayed there as a fullfamily.
Ethan, um, who's our older son,uh, was able to stay with us
(12:15):
also.
So it really it looked at thiscare and caregiving holistically
from a whole family approach.
It wasn't just about the childthat was affected, it was the
entire family that needs to besupported along these journeys.
And that's what was so awesomeabout it.
And so we stayed there as a fullfamily.
We got very comfortable withthat care.
It's not a babysitting serviceand it's not a long-term
(12:38):
facility.
The kid doesn't, you know, Ryanwouldn't live there.
It was really for at least 48hours of respite.
So it's always includes anovernight.
It's it's not about a few hoursof we'll care for your kid as
babysitting so that you can goto a date night dinner.
Right.
That's very important forfamilies, also, but that's not
what this is.
This is at a whole nother levelof care that you truly tuss
(13:01):
trust the team.
It's about two days to up toseven days in a row, up to 28
days a year at no cost.
This place didn't chargefamilies anything for anything.
And then we got to be aroundother families and support staff
that really understood this.
So we could start to think aboutdeath and dying and finding joy
and sharing pictures and justcamaraderie and community.
(13:24):
Um, and we had an opportunitythen to have Ryan stay there by
himself so that we could go homeand sleep in our own beds for a
few days.
We could spend time with ourgrowing toddler Ethan, who was a
few years and very active, andjust protect our marriage,
protect, protect everything.
And then um we had, you know,this was still now part of our
(13:46):
caregiving support system forabout a year and a half, and
then we realizing okay, we'revery much getting close to
Ryan's second birthday, the datethat we never thought we were
gonna reach.
And we're still in England.
We got to get home to this toArizona and basically get
prepared for Ryan's death.
And so we moved back to Phoenix,Arizona.
I got a job, we got Ryanscheduled with uh therapists,
(14:09):
and on our last stay at HelenHouse, um, we asked the team,
okay, this is now so importantto us, how do we continue this
kind of care in Arizona?
SPEAKER_01 (14:18):
Now that you've discovered it.
SPEAKER_00 (14:20):
Yeah, there were 54 of these kinds of
community-based care modelsacross the United Kingdom at
that time.
SPEAKER_01 (14:27):
Wow.
SPEAKER_00 (14:27):
When we came back to Arizona 20 years ago, the team
looked at us and they said,Yeah, no, there's none of these
in the United States, let aloneArizona or nowhere.
SPEAKER_01 (14:39):
And and that's just crazy.
I mean, the UK, the whole UKfits into Texas, and here we
are, this whole giant country,and there's not a not a nothing.
SPEAKER_00 (14:50):
Our country is five times bigger population-wise
than the UK.
And you said geographically itfits into Texas, and then
population-wise, we're fivetimes bigger.
They had 54 of these houses.
We should have hundreds ofthese.
We had none 20 years ago.
And so when we came back, wesaid, Well, that stinks.
There's nothing we can do aboutthat.
We got Ryan's care going.
I got a job.
(15:11):
Life kind of resumed.
And then about a year afterbeing back, my wife started
passionately talking about ourexperiences at Helen House, and
a community started to rallyaround her.
Um, and long story, long storyshort, um, people kept saying, I
can't believe this doesn'thappen.
This needs to happen.
And so we had a communitymeeting with some various
(15:32):
community leaders, just tryingto share this idea.
And on the drive home, my wifeand I looked at each other and
we said, I think everybody'stelling us we we need to do
this.
I guess we're doing this.
And so we incorporated what hasbecome Ryan House.
And our goal very much becameagain, we had no intention of
starting a nonprofit.
We had no intention of doingthis, it just kind of
(15:54):
organically happened.
We often say the stars aligned.
Right family, right set ofexperiences, right kind of
connections in the community.
So when we made the decision toincorporate and become Ryan
House, um, our vision thenquickly became to bring Helen
House to Phoenix.
Nothing more, but nothing less.
SPEAKER_01 (16:13):
All right.
SPEAKER_00 (16:13):
So we had a clear model at least to work on.
Yeah, exactly.
We had no idea how to build it,we had no idea how to license it
or pay for it.
SPEAKER_01 (16:19):
We knew what it was supposed to look like.
SPEAKER_00 (16:21):
Yep, we just knew what it was supposed to do.
All right, and so um we werevery fortunate.
Exactly.
It just just passion andpersistence and just go for it,
man.
And so we were very fortunate toget involved with some amazing
community leaders here inPhoenix.
They became our board members.
I was the first board chair, I'mthe one that filled out all the
(16:43):
501c3 paperwork to become anonprofit.
Um, and a lot of those firstmeetings were arranged by some
of our community board membersthat would have a meeting with
the Rotarian group at thePhoenix Country Club.
SPEAKER_01 (16:55):
And they're all about that stuff.
I run a 501c3.
SPEAKER_00 (16:57):
Yeah, they basically tell, you know, I was told,
okay, show up tomorrow at 7 a.m.
for the breakfast.
Here's a microphone, tell themwhat we're doing and make them
cry.
Yep.
I'm like, okay.
So we basically had to kind ofshare our family journey and our
experiences and why this wassuch an amazing care model to
this group in Phoenix who verymuch supported it.
(17:18):
It took us six years of raisingmoney.
We eventually raised enoughmoney and got land donations and
and ultimately put a shovel inthe ground, formed partnerships,
and Ryan House was opened.
Um, we incorporated in 2004.
Ryan House was opened in 2010.
We never thought Ryan would bealive when Ryan House opened.
SPEAKER_01 (17:38):
Meanwhile, he's still going.
SPEAKER_00 (17:39):
Yeah, yeah.
The kid just kept going.
Moldy cheese.
And um he and he and his olderbrother were able to do the the
rope untying to officially openthe house.
Um and then it's been open nowfor over 15 years.
It has served thousands offamilies with this overnight
respite and emotional support.
It has nurses in the house 24-7.
(18:00):
It has childlife specialists andsocial workers and chaplain
services.
It's not a medical model, it's acaregiving model.
It really is a community-basedmodel of care to help enhance
quality of life along these verydifficult journeys.
We want to connect with familiesthe moment they find out they're
on this journey, whichoftentimes is at diagnosis.
But I actually believe thatthere's even ahead of that with
(18:23):
a moment of concern.
A lot of times with children,there are thousands of rare
diseases that I can't even beginto pronounce.
SPEAKER_01 (18:30):
Absolutely.
And but you just know somethingtheir own set of challenges and
their own Yeah.
SPEAKER_00 (18:37):
But you just know something's not right.
And so when you sense thatsomething's not right, Ryan
House, if you're here in in theArizona market, Ryan House can
support you, provide you abreak, an opportunity for care,
and then help you think throughyour journey with anticipatory
grief and planning and just helpyou find joy throughout the
journey.
(18:58):
And then if and when your childneeds end-of-life care or
hospice, then it becomes thenatural children's hospice home,
also.
So it's not built for death anddying, it is built for the
journey that oftentimes will bedeath and dying and end of life.
And so um, again, we've servedthousands of families in the 15
(19:18):
years.
We've had over 550 children dieat Ryan House, including my son
Ryan, who took his last birththere in um December of 2018.
SPEAKER_01 (19:26):
Wow, what a powerful experience! And how big is this
place?
SPEAKER_00 (19:31):
Uh, so the house itself is very much modeled
after Helen House in in England.
So it's from a square footageperspective, it's about 12,500
square feet.
It has eight children'sbedrooms, three family suites,
because the first time a familycomes and stays, mom and dad or
the primary caregiver has tostay at the house also.
It always is at least 48 hours.
(19:53):
So it always includes anovernight.
And oftentimes, children onthese medical fragile, you know,
that are have very complexmedical conditions, they've
never been cared for by anybodyother than mom or dad.
Or mom and dad have neverallowed anybody to care for them
other than themselves.
So there's kind of a I describeit kind of as a weaning off
period a little bit whereeverybody just has to get
(20:13):
comfortable.
The team at Ryan House, theyknow how to do tracheotomy care.
They know how to do G tubes andfeeding tubes and transfer kids
from wheelchairs and domedicines throughout the day.
It's really the trust and thejust the nuances of the unique
care of that particular child.
SPEAKER_01 (20:29):
The parents have to come quickly to be able to trust
the team because that's you knowvery very, very difficult for
somebody who's been the onlyones that know how to take care
of their kid.
And now they're gonna say, okay,well, there's somebody else who
knows how to do what we do.
SPEAKER_00 (20:46):
Yeah.
I mean, our older son, our olderson Ethan, able-bodied now 27
years old, he could go stay thenight at a friend's house, a
babysitter could easily care forhim.
But if and there were peoplethat wanted to help us with
Ryan, um, and some people wetrusted to do that with, but a
lot of times it's like if you'renot comfortable moving him, you
could break his bone.
Oh, yeah, he had a lot offragile conditions, you may miss
(21:09):
his medicines.
Um, it it gets very intense.
And for somebody to take on thatresponsibility, they want to
help, but they just can't.
It's just the reality of it.
Um, and so the this house alsohas specialty rooms.
So if you were to take a virtualtour of a Ryan house kind of a
model, not only do theysometimes videos on YouTube for
(21:34):
houses like Ryan House that youcan take virtual tours, but it's
um it's not only do they havethe eight children's bedrooms,
the three family suites, um,because when a child is there
for end-of-life care, thefamilies want to be in that
house.
They want to basically, when achild is there for end-of-life
care, the team at a place likeOrion House um is there to
(21:55):
provide all the caregivingsupport so that mom and dad can
be mom and dad and really focuson the love and the and the just
those memories and just theexperience of the end-of-life
journey.
But there's also specialtyrooms.
So, like there's a music room,there's an art room, a sensory
room, the playground isaccessible.
My son drove a wheelchair so hecould get onto the playground
(22:16):
and enjoy himself.
There was a memorial garden.
So the place was built from theground up for children with
significant medical complexitiesand their families to do this
kind of care.
And there are other communitiesacross the country that have
tried to do this kind of care.
So when we started Ryan House, Ilooked out into the country.
I'm like, come on, we can't bethe only one doing this.
SPEAKER_01 (22:38):
Right, right.
SPEAKER_00 (22:39):
And I discovered there are lots of other
communities and passionatepeople that have heard about
these kinds of models that wantto do something very similar,
but it's really hard.
Um, it's very difficult to raisethe kind of philanthropy charity
dollars that it takes to run aRyan House because again, Ryan
House doesn't charge anything toany, you know, it doesn't charge
families anything for any of thecare.
(22:59):
It is all done through supportand generosity of the Arizona
community.
And it raises three and a halfmillion dollars a year.
SPEAKER_01 (23:06):
End up donating, anyways.
SPEAKER_00 (23:09):
Yeah, yeah, absolutely.
Well, so for Ryan House, itraises three and a half million
dollars a year throughphilanthropy.
The, the, the main, so theseother communities across the
country that have been trying todo this, they really struggle
with trying to raise that kindof level of money to build a
house and to sustain a house.
And so these differentcommunities had yearned for
(23:30):
national leadership.
We'd get together every once ina while as we discovered each
other, and we'd kind of talk andwe'd say, Hey, wouldn't it be
great if there was a nationalleadership?
But nobody was willing to kindof step up and lead this charge
from a national level.
I wasn't willing to do it eitherbecause I through these years
was dad of Ryan.
Right.
You know, I was a vice presidentof marketing trying to support
(23:53):
my own family.
Yeah, I was still very involvedin the board at Ryan House,
sure, and I didn't have time todo it, but then Ryan died.
Right.
And and when Ryan died inDecember of 2018, that changed
everything for me.
Okay, that hit me really hard.
SPEAKER_01 (24:11):
Of course.
SPEAKER_00 (24:12):
Um, and I decided that became the significant
tipping point for me.
I when you have a death of achild, so in in Ryan's last
couple years of life, when hewas 15 years old, we started to
get a lot of um nighttimenursing and home health support
in our house.
Um, and Ryan was cared for.
(24:32):
We were very good champions ofRyan's care and working the
system to be able to helpsupport this.
And a lot of families strugglewith that.
My wife and I became veryexperienced and very effective
at championing the system to getcare for Ryan.
And so in the last couple ofyears of his life, we had five
nights of nighttime nursingcoming into our house.
There was just a a road road,you know, rotation of people
(24:54):
coming in our house all thetime.
That was just life.
But when your child dies, all ofthat stops immediately.
Right.
And then it's quiet.
SPEAKER_01 (25:03):
Yeah.
SPEAKER_00 (25:03):
And the quiet is deafening, it just drives you
nuts because you're just notused to that for 17 and a half
years.
Right.
And and so I really decided thatI got so frustrated at the US
healthcare system that we neededto we need to change the system.
We need to help these models umget open.
(25:24):
And we need to basically whatwe're taking is a child, a model
of care really designed forchildren and families that were
that is trying to fit into aworld really designed for adult
care.
Okay.
And so licensing andreimbursement pathways for to
support these kinds of modelsbeyond philanthropy need to be
rethought about and reframed.
And so I decided that when Ryandied, that I maybe it's the
(25:46):
time, maybe I'm the guy.
Let's let's go for this now.
SPEAKER_01 (25:50):
All right.
SPEAKER_00 (25:50):
I I went back to school.
I decided I I I love parentadvisory councils, but I thought
I had the skill set, the lifeexperiences, the passion to do
something more.
Went back to school, got amaster's in public health so
that I could become a publichealth expert.
All right.
Went to Johns Hopkins, got afabulous education and an
outstanding network that I wasable to now kind of re-emerge as
(26:13):
a national thought leader inthis space.
Wow.
Um, and then what I started todo is kind of um corral these
communities across the countryinto a cohesive, formalized
coalition.
And so we created um, and again,I didn't respond to that.
What's that?
SPEAKER_01 (26:30):
How did they respond to that?
I mean, no, they loved itbecause again, they're
hunger-free for it.
SPEAKER_00 (26:35):
Yeah, they were looking for leadership and
community building and realizingthat they're not alone.
And so what happened was justlike when my wife Holly and I
started Ryan House, we didn'tintend to do it.
People started to aroundsurround us.
The same thing kind of happenedat the national level where
these communities were really,you know, really just looking
for this kind of leadership.
And so it just needed a stake inthe ground to really rally
(26:58):
around.
And so I created that.
So we launched an organizationcalled the National Center for
Pediatric Palliative Care Homes,which is a mouthful.
And so we just refer to usourselves as the national
center.
Yeah.
Um, and then what we did is wecreated an umbrella brand called
Children's Respite Homes ofAmerica.
And we have a website calledchildren's respitehomes.org.
(27:20):
And that really is the morepublic-facing, easier to kind of
remember, children'srespitehomes.org.
That really is a website that isus that really shows you the 41
pioneers and leaders across theUS now, across 28 states that
have now come together, that areall trying to do these kinds of
programs in their own states.
So it's everything up in Seattleto Atlanta to Iowa to New York,
(27:46):
um, Ohio, all across thecountry.
We're helping to support now.
We're we've got basically threemain pillars.
We're trying to bring moreeducation and awareness to these
family journeys and this modelof care.
We're trying to advocate andchange the world.
And really, that's aboutlegislation and policy.
And that's why I went and got amaster's in public health.
SPEAKER_01 (28:06):
To really help in the room, yeah.
SPEAKER_00 (28:08):
Yeah.
So let's we got to change thisat the federal level.
We need to have conversationswith the centers of Medicare and
Medicaid.
We need to have nationallegislation and the Social
Security Act.
And it's that's the stuff I getexcited about now because that's
really the change the worldstuff.
And then at the state level, weneed to change licensing and and
reimbursement payment models,and that gets into weeds in
(28:29):
detail, but that's what I'mdesigned to do now.
And then we also have communitybuilding, which is really about
these leaders in thesecommunities, in these families
to say, you're not alone.
We see you, we hear you, we cansupport you.
Um, and so what I love aboutthese conversations is as you've
got kind of a nice nationalreach also.
(28:49):
So if a family is hearing thisand going, well, I don't live in
Phoenix, I live in Atlanta,Georgia, it's like there is a
program trying to get going inAtlanta.
Um, and so on children'srespithomes.org, we have a map
that you can link to findwherever you are.
We can link to the closestprogram that's developing.
You can get more involved inthat group if you want to get
(29:12):
involved and support themlocally.
If you're interested in in thiskind of a movement and and have
some skills or experience orpassion and want to help change
the world and get involved withus at a national level, we love
that too.
Um, and and that's really whatwe're doing now.
And so I say my son is clearlymy North Star.
He's definitely my fuel and myenergy.
(29:33):
Um, and and that's you know,that's what's going on.
SPEAKER_01 (29:38):
I see that um the information I have says you guys
are on a roadmap to build 50children's care homes in 50
cities over across the next fiveyears.
Yeah.
And so I I know we're runninglow on time, but this is we're
we're doing really well.
I think um I I I don't want tonip this too tight.
(29:59):
Um So you still have the onehome that is functioning.
Are there others that havestarted up yet?
SPEAKER_00 (30:08):
Yeah, yeah.
So the the what we've done is wewanted to showcase the success
that is happening across thecountry.
So 20 years ago, when my wifeand I came back from England,
nothing.
There were none of these in theUnited States.
Ryan House in Phoenix ended upopening as the second one of
these in the United States.
The first one is called GeorgeMark Children's House in a
(30:29):
suburb of Oakland, California.
Also inspired and modeled afterwhat was happening in the UK.
The third house that opened iscalled Crescent Cove in the Twin
Cities in Minneapolis.
And they were also learningabout this model.
They heard about Ryan House.
They came down and visited us inPhoenix, and we kind of helped
inspire a lot of the design ofwhat was going on in
(30:52):
Minneapolis.
Those are the three houses thatare very much the UK Helen House
kind of model.
Okay.
We also have four other programsthat are open in our coalition
that are iterations on thistheme.
They all care about medicallyfragile children.
They're all delivering respitecare in their communities, and
(31:13):
they're all very passionateabout trying to make change like
this.
And so that's uh Salt Lake City,Seattle, South Bend, Indiana,
Chicago, are the other openprograms.
And then what you'll see on ourmap at children's
respitehomes.org are those arethe green dots on our map.
And we want those to be 50 inthe next five years.
SPEAKER_01 (31:33):
Yeah, that's a good starting point.
SPEAKER_00 (31:35):
Yeah, and we want hundreds of them eventually to
be the same scale as the UK.
And then we have yellow dots,which are nonprofits that are
organized in communities thatare currently raising money.
Some of those programs arealready doing some support.
They don't have a physical houseyet to do overnight respite, but
they're already providing somelevel of care or certainly doing
runs and charity events andbreakfasts and galas and raising
(31:59):
money.
So there are ways to getinvolved locally on the yellow
dots for sure.
And then we have blue dots,which are the new pioneers.
Those are the people that haveheard about us, have heard about
this kind of care model and say,oh, we need this in our
community.
And so we have a lot of bluedots.
And then what our organizationdoes is kind of coach and guide
them through how to start anorganization, how to become a
(32:21):
nonprofit, how to form boards,how to, how to really kind of
build this kind of a program andultimately how to advocate with
your state to get this thing tobe sustainable so that you don't
have to depend on philanthropyforever.
And it's um, it just is anamazing.
I mean, we're three years intoour organization now.
We're just getting ready tostart our fourth year.
(32:42):
Um, I wish that we were muchfarther ahead because I've got a
ton of passion and I excitementand I know this is going to take
a lot of years.
But I also reflect back on thelast three years and go, wow,
we've accomplished a lot.
The fact that we've got 41pioneers in programs across 28
states all working together.
We've got amazing governmentaffairs councils with just some
(33:03):
significant national thoughtleaders that want to help make
this change happen.
We've got national advisorycouncils, an amazing board of
directors and supporters.
And so it's a it's a verydifferent day today than it was
20 years ago when my wife and Istarted Ryan House.
We had no idea what was goingon.
SPEAKER_01 (33:20):
Wow.
Wow, you guys have had a as fewpeople I've met have made a
giant impact on the world, justas you set out to.
Well, listen, Jonathan.
Um I'd always like to try towrap things into a parting shot
as a final thought that you knowclearly we have a lot more we
(33:41):
could talk about.
I'd love to have you come backand go deep into some of these
little topics.
We didn't even really discussthe family, yeah, the burden to
the marriage, to the family, andall that.
And there's so many elementsthat we could go deeper on.
But if you've got one messagethat you'd like to send our
listeners with, I'd certainlylove to hear what that sounds
(34:02):
like.
SPEAKER_00 (34:03):
I I think that the the um you know, from a family
perspective, we get it, weunderstand it.
These are very difficultjourneys.
I think that there's a lot oflove and support and and wanting
to help you on these journeys.
And I think that uh from acommunity building, if if you're
listening to this, I'm amarketing person.
(34:23):
My wife was a school teacher.
We are not, you know, we didn'tstart these kind of programs
with an idea that we are policyexperts or business experts.
We just had passion and said weneed to help our community get
this level of caregiving forthese families.
And to those people that reallyare hearing this for that,
there's support for you also.
(34:43):
There's, you know, please checkout children's respithomes.org
to learn more, to get involvedwith us, to um get on our
contact email list.
Um it's just it's a you know, wegot a long way to go in America,
but we're making progress.
SPEAKER_01 (34:58):
Beautiful.
And uh children's so why don'tyou go ahead and give us our
your contact information again?
I I yeah, sure.
SPEAKER_00 (35:05):
The easiest way to try and remember this is
children's respitehomes.org isour website.
And then through that you canget to all of the links and
Facebooks and Linkins and allthat other stuff too.
SPEAKER_01 (35:16):
But beautiful, beautiful.
Well, Jonathan, this has been avery inspiring conversation.
I would certainly love to haveyou back to go deeper into this
and just want to thank you forsharing your time with us.
SPEAKER_00 (35:27):
Joe, this has been great.
Thank you very much for havingme.
SPEAKER_01 (35:30):
Beautiful.
Well, this has been anotherepisode of the Healthy Living
Podcast.
I'm your host, Joe Grumbine, andI'd like to thank our listeners
for making this all possible.
And we will see you next time.
Well, hello, and welcome back to the Healthy
Living Podcast.
I'm your host, Joe Grumbine, andtoday we have with us a very
special guest.
His name is Jonathan Cotter, andwe just had a nice little
conversation.
Um, and he's got a very uniqueprogram, a very unique life
situation that so many people uhfind their way to this show.
(00:25):
Uh Jonathan has a son that manyyears ago was diagnosed with a
condition called spinal muscularatrophy as an infant.
And um over 17 years, Jonathanand his wife co-founded an
organization called Ryan House,and it's one of the few
(00:47):
children's respite andpalliative care homes in the
U.S.
And really, I just want to openthe door right there because
that is something that we werejust talking about, is a
discussion that really needs tobe had.
Palliative care, um, respitecare and children don't
generally end up in the sameconversation.
(01:09):
Jonathan, welcome to the show.
It's great to have you heretoday.
SPEAKER_00 (01:12):
Joe, wonderful, wonderful uh opportunity.
I appreciate the chance to get achance to talk.
This is great.
SPEAKER_01 (01:18):
Absolutely.
So you have a very, very uniquestory.
And um, I I always like to givea guest a chance to kind of tell
us about how you got here.
And why don't you tell us alittle bit about that experience
raising a son with thiscondition?
And um, you know, it's it seemslike a very interesting and
(01:39):
important story.
SPEAKER_00 (01:40):
Yeah, I appreciate that.
Um, so uh the other thing, youand I discovered we're about the
same age, too.
So um we kind of have the samegeneral life experiences.
In my case, my wife and I um areArizona family, so I'm I'm
talking to you out ofScottsdale, Arizona right now.
Um, we've been married for over33 years.
When we got married, uh mycareer was in marketing.
(02:02):
I worked for brands that youknow and love.
So I started my life at the DialCorporation on Dial Soap.
Um, my wife was a schoolteacher.
We went off to see the world.
After a few years of marriage,we moved to Green Bay,
Wisconsin, and I worked forBriars Ice Cream.
After a couple years, we movedto the Twin Cities and the
Pillsbury Company.
Wow.
Um, and I at that point was asenior marketer.
(02:23):
We loved living in the TwinCities.
That's where we had our firstson, Ethan, who's now 27 years
old.
Uh, he's a bassist in the deathmetal band, so that'll be a
story for another day.
Uh, and it was in um inMinneapolis that the Pillsbury
Doughboy gave us the opportunityto go to London, England and do
a job assignment in London.
(02:44):
So that's where we went afterthree years in Minneapolis.
We moved to London for threeyears.
Uh, and after landing there, wedecided to continue our family.
And so our young son Ryan wasborn, and that's the really the
story that we'll talk more abouthere today.
Um, Ryan was our second son,beautiful birth.
We were already parents, so weknew about toddlers and diaper
(03:05):
changes, and we thought we hadthis down.
Um, and at eight months old,Ryan actually, the the the
important thing is that wethought he was a late bloomer.
He was a perfect baby looking 10fingers, 10 toes, perfect apgar
score, but something just wasn'tright with him.
He just didn't have anystrength.
(03:25):
He wasn't sitting up umunassisted, holding his head up
like our other son, who waspractically running at 10
months, was doing.
And so my parents had come overfrom Arizona to visit us for the
holidays.
And my mom held Ryan for thefirst time, immediately teared
up and said, I'm so sorry.
(03:45):
Looked at my wife and said, I'mso sorry.
And that was the confirmationthat, okay, something just is
not right here.
My mom, you know, I have threesisters.
My mom was used to babies, andso that was really the trigger
that put us on the road todoctor visits and specialists.
And that's when we were giventhe diagnosis of spinal muscular
atrophy, which turns out it's arare genetic disease.
(04:07):
I'm a carrier, my wife is acarrier, and it just the odds
play out.
Wow.
And this was 20 21 years ago.
He was born in 2001.
Um, and at that time, SMA had notreatments and no cures.
Uh, and we were basically toldRyan was eight months old, don't
expect him to live to two, andthere's nothing you can do about
(04:29):
it.
SPEAKER_01 (04:29):
Wow.
SPEAKER_00 (04:31):
So our world was shattered, and we were 11 hours
away from the closest familymember, all back in Arizona.
My wife is from Tucson, Arizona,born and raised.
And so it just literally wasdevastating news to hear.
Um, and that's kind of, youknow, obviously was grief and
how is this happening and whatare we going to do about all
this stuff?
And at that point, Ryan's carereally was starting to get much
(04:54):
more intensive.
We started to, you know, it'scalled spinal muscular atrophy
for a reason.
We needed to start to do a lotof physical therapy with Ryan to
try and keep his joints loose sothey didn't just stiffen up his
legs and his arms.
He wasn't able to kind of brushhis teeth, or or I mean he was
only eight months old at thispoint, but um, he he needed a
(05:14):
lot of attention.
And he we found ourselves in thehospital quite a bit because he
was getting pneumonias.
His body wasn't able to get goodbreaths, so he would get colds
more frequently.
And so um, the other major pointwas this was his care became
intensive 24 hours a day, sevendays a week, which includes the
evenings.
(05:35):
So, where most of us, when wesleep, we wrestle around a
little bit to get comfortable.
Ryan couldn't do that.
Ryan, you put him on his back,and 45 minutes later or an hour
later, he would cry out becausehe needed to be changed
position.
So either my wife or I had to gointo his bedroom, flip him on
his side, 45, try and go back tobed.
Um, 45 minutes later, an hour,he'd cry out again.
(05:57):
One of us would go to his room,flip him on his other side.
And so we always trainedourselves to kind of live on
very little sleep, or we werealways on guard and always
alert, and it just becomesincredibly exhausting.
unknown (06:09):
Wow.
SPEAKER_00 (06:10):
Plus, you have this um, and and this is I think
where you and I all end uptalking a lot too, is that this
idea that not only was hismedical care and his caregiving
needs intensive, but you alsohave this cloud and umbrella
over this whole thing, which wasreally the emotional journey
that we now found ourselves on,because there was no treatments
(06:31):
and no cures and a lifeexpectation that he won't live
to two.
And how do you find joy?
How do you live life trying toreally um deal with all the
medical caregiving needs of theday, but also just try and find
joy when you're also trying tothink about should I be planning
for funerals?
Should we be planning a death?
How do we, and so that's what'scalled anticipatory grief.
(06:52):
And then that really kind ofgets into this bigger idea of
palliative care support, whichis really just beautiful and
wonderful and helping familiesand people thrive throughout the
lifespan, adults, kids,everything, just about how do
you kind of go through journeyslike this, especially when
they're kids?
SPEAKER_01 (07:10):
So you know, hope is such a powerful word.
I know, you know, I'm overcominga very aggressive cancer right
now.
And in my journey, I found aplace where I said I can fix on
this hope of okay, if I it's asolvable problem, all I gotta do
is find the answers and do thehard work.
And I have hope.
(07:33):
And so, was there anything outthere?
I mean, I'm I'm sure you weredoing research and meeting
people, and you've probablydedicated your whole life as I
did to we gotta see if there'ssomething out like you just
because they say there's no hopedoesn't mean that we give up,
right?
SPEAKER_00 (07:48):
Oh, yeah.
Well, I mean, I think that umthe I've been around now.
This was, you know, Ryan died atthe age of 17 and a half years
old.
He did survive his secondbirthday, then a third birthday,
then a fourth birthday, and thekid kept going.
If he was here joining ourconversation, he would describe
himself as moldy cheese, waypast his expiration date.
The kid was cheeky, he waswicked smart, mature beyond his
(08:10):
years, very verbal.
You couldn't shut the kid up,but he was very physically
challenged.
So at 17 and a half years old,when he died almost seven years
ago now, he was using a powerwheelchair for mobility.
The computer that you and I aretalking on is a gaming computer
that he and I built together.
Um, so he was very active and hehad a joyful life, but it was
very challenging.
(08:31):
But in those early days, rightwhen we were talking about hope,
um, I believe that families whohave children that are impacted
with medical fragile conditionsor rare diseases like this that
are not expected to live longlives, the number one thing that
those families want more thananything in the world is a cure
for their child.
That's what they hope for.
(08:51):
They'll give anything to curetheir child.
But then what you realize isthat sometimes there are
treatments and sometimes thereare cures.
In our case, there was none ofthat available.
But we had we got to save moneyor we got to raise money, we got
to find a cure, we got to chasethis thing.
And then what you realize is youalso need sleep.
Right.
And that I believe that thesecond thing that these families
(09:12):
need more than anything issleep.
And that was really the um, Ithink the thing that we quickly
realized is as we were reallystruggling with our day-to-day
lives now, the physicaltherapist that was helping us,
and we were now seeing veryactively when Ryan was young in
England.
Um, that person referred us to aplace called Helen House, which
(09:34):
is the world's first children'srespite, palliative and hospice
home.
And it was started in 1982 inOxford, England, which happened
to be 45 minutes up the roadfrom us from where we were
living in London.
SPEAKER_01 (09:45):
But it's the very first one was only put together
40 years ago.
SPEAKER_00 (09:50):
Exactly.
Yeah, this whole this wholehospice care and palliative care
concepts really started inEngland.
That's kind of the mothership ofall of this kind of care.
It has expanded over, certainlythrough adult care and hospices.
I think most people are familiarwith end of life and hospice
care for adults, but forchildren, it really is only 40
years young and it reallystarted in England.
unknown (10:12):
Wow.
SPEAKER_00 (10:13):
But it was it was described to us as a children's
hospice home.
And so, with those words andbeing very scared and trying to
find hope, my wife and I reallyrejected that whole concept
right a very right away.
And we said, we're not goingthere.
Um, we need that's death, that'sdying, that's giving up.
We need to find hope, we need tofind a solution to this.
(10:34):
And the the physical therapistjust kept referring to response,
right?
Yeah.
And the physical therapist justkept reinforcing to us it's a
place to support your familyalong these very difficult
journeys with overnight respite,which is a true break.
We will care for your child sothat mom and dad can truly
sleep, um, and that it haspalliative care support, which
(10:56):
it means that the team isinterdisciplinary.
Not only does it have nurse,it's a basically Helen House.
When we finally agreed to go, itwas a warm blanket of love.
It was absolutely not what weexpected.
We thought it's not a hospital,it's not a nursing facility.
It was truly a community-based,very large home with eight
(11:16):
children's bedrooms and threefamily suites and then specialty
rooms.
Uh, and so when we walked in, weimmediately felt our shoulders
come down.
We immediately felt, okay, we'rearound people that get it, that
understand this journey thatwe're on, because it's just you
don't see families like ours inout at restaurants and in movie
(11:37):
theaters because we're at homewith so much care needs.
SPEAKER_01 (11:40):
Right.
So, was there like a momentwhere like obviously you went
from we're never gonna do thisto well, maybe we'll go visit.
Was there something thathappened that caused that break,
or just you just finallydesperation and exhaustion?
SPEAKER_00 (11:53):
And we finally, it just the the physical therapist
was just relentless in herreferrals, and we finally said,
All right, stop bugging us,we'll go check it out.
Right.
And when we did, like I said, awarm blanket of love, it really
felt like we were in a placethat that felt very comfortable
immediately.
We stayed there as a fullfamily.
Ethan, um, who's our older son,uh, was able to stay with us
(12:15):
also.
So it really it looked at thiscare and caregiving holistically
from a whole family approach.
It wasn't just about the childthat was affected, it was the
entire family that needs to besupported along these journeys.
And that's what was so awesomeabout it.
And so we stayed there as a fullfamily.
We got very comfortable withthat care.
It's not a babysitting serviceand it's not a long-term
(12:38):
facility.
The kid doesn't, you know, Ryanwouldn't live there.
It was really for at least 48hours of respite.
So it's always includes anovernight.
It's it's not about a few hoursof we'll care for your kid as
babysitting so that you can goto a date night dinner.
Right.
That's very important forfamilies, also, but that's not
what this is.
This is at a whole nother levelof care that you truly tuss
(13:01):
trust the team.
It's about two days to up toseven days in a row, up to 28
days a year at no cost.
This place didn't chargefamilies anything for anything.
And then we got to be aroundother families and support staff
that really understood this.
So we could start to think aboutdeath and dying and finding joy
and sharing pictures and justcamaraderie and community.
(13:24):
Um, and we had an opportunitythen to have Ryan stay there by
himself so that we could go homeand sleep in our own beds for a
few days.
We could spend time with ourgrowing toddler Ethan, who was a
few years and very active, andjust protect our marriage,
protect, protect everything.
And then um we had, you know,this was still now part of our
(13:46):
caregiving support system forabout a year and a half, and
then we realizing okay, we'revery much getting close to
Ryan's second birthday, the datethat we never thought we were
gonna reach.
And we're still in England.
We got to get home to this toArizona and basically get
prepared for Ryan's death.
And so we moved back to Phoenix,Arizona.
I got a job, we got Ryanscheduled with uh therapists,
(14:09):
and on our last stay at HelenHouse, um, we asked the team,
okay, this is now so importantto us, how do we continue this
kind of care in Arizona?
SPEAKER_01 (14:18):
Now that you've discovered it.
SPEAKER_00 (14:20):
Yeah, there were 54 of these kinds of
community-based care modelsacross the United Kingdom at
that time.
SPEAKER_01 (14:27):
Wow.
SPEAKER_00 (14:27):
When we came back to Arizona 20 years ago, the team
looked at us and they said,Yeah, no, there's none of these
in the United States, let aloneArizona or nowhere.
SPEAKER_01 (14:39):
And and that's just crazy.
I mean, the UK, the whole UKfits into Texas, and here we
are, this whole giant country,and there's not a not a nothing.
SPEAKER_00 (14:50):
Our country is five times bigger population-wise
than the UK.
And you said geographically itfits into Texas, and then
population-wise, we're fivetimes bigger.
They had 54 of these houses.
We should have hundreds ofthese.
We had none 20 years ago.
And so when we came back, wesaid, Well, that stinks.
There's nothing we can do aboutthat.
We got Ryan's care going.
I got a job.
(15:11):
Life kind of resumed.
And then about a year afterbeing back, my wife started
passionately talking about ourexperiences at Helen House, and
a community started to rallyaround her.
Um, and long story, long storyshort, um, people kept saying, I
can't believe this doesn'thappen.
This needs to happen.
And so we had a communitymeeting with some various
(15:32):
community leaders, just tryingto share this idea.
And on the drive home, my wifeand I looked at each other and
we said, I think everybody'stelling us we we need to do
this.
I guess we're doing this.
And so we incorporated what hasbecome Ryan House.
And our goal very much becameagain, we had no intention of
starting a nonprofit.
We had no intention of doingthis, it just kind of
(15:54):
organically happened.
We often say the stars aligned.
Right family, right set ofexperiences, right kind of
connections in the community.
So when we made the decision toincorporate and become Ryan
House, um, our vision thenquickly became to bring Helen
House to Phoenix.
Nothing more, but nothing less.
SPEAKER_01 (16:13):
All right.
SPEAKER_00 (16:13):
So we had a clear model at least to work on.
Yeah, exactly.
We had no idea how to build it,we had no idea how to license it
or pay for it.
SPEAKER_01 (16:19):
We knew what it was supposed to look like.
SPEAKER_00 (16:21):
Yep, we just knew what it was supposed to do.
All right, and so um we werevery fortunate.
Exactly.
It just just passion andpersistence and just go for it,
man.
And so we were very fortunate toget involved with some amazing
community leaders here inPhoenix.
They became our board members.
I was the first board chair, I'mthe one that filled out all the
(16:43):
501c3 paperwork to become anonprofit.
Um, and a lot of those firstmeetings were arranged by some
of our community board membersthat would have a meeting with
the Rotarian group at thePhoenix Country Club.
SPEAKER_01 (16:55):
And they're all about that stuff.
I run a 501c3.
SPEAKER_00 (16:57):
Yeah, they basically tell, you know, I was told,
okay, show up tomorrow at 7 a.m.
for the breakfast.
Here's a microphone, tell themwhat we're doing and make them
cry.
Yep.
I'm like, okay.
So we basically had to kind ofshare our family journey and our
experiences and why this wassuch an amazing care model to
this group in Phoenix who verymuch supported it.
(17:18):
It took us six years of raisingmoney.
We eventually raised enoughmoney and got land donations and
and ultimately put a shovel inthe ground, formed partnerships,
and Ryan House was opened.
Um, we incorporated in 2004.
Ryan House was opened in 2010.
We never thought Ryan would bealive when Ryan House opened.
SPEAKER_01 (17:38):
Meanwhile, he's still going.
SPEAKER_00 (17:39):
Yeah, yeah.
The kid just kept going.
Moldy cheese.
And um he and he and his olderbrother were able to do the the
rope untying to officially openthe house.
Um and then it's been open nowfor over 15 years.
It has served thousands offamilies with this overnight
respite and emotional support.
It has nurses in the house 24-7.
(18:00):
It has childlife specialists andsocial workers and chaplain
services.
It's not a medical model, it's acaregiving model.
It really is a community-basedmodel of care to help enhance
quality of life along these verydifficult journeys.
We want to connect with familiesthe moment they find out they're
on this journey, whichoftentimes is at diagnosis.
But I actually believe thatthere's even ahead of that with
(18:23):
a moment of concern.
A lot of times with children,there are thousands of rare
diseases that I can't even beginto pronounce.
SPEAKER_01 (18:30):
Absolutely.
And but you just know somethingtheir own set of challenges and
their own Yeah.
SPEAKER_00 (18:37):
But you just know something's not right.
And so when you sense thatsomething's not right, Ryan
House, if you're here in in theArizona market, Ryan House can
support you, provide you abreak, an opportunity for care,
and then help you think throughyour journey with anticipatory
grief and planning and just helpyou find joy throughout the
journey.
(18:58):
And then if and when your childneeds end-of-life care or
hospice, then it becomes thenatural children's hospice home,
also.
So it's not built for death anddying, it is built for the
journey that oftentimes will bedeath and dying and end of life.
And so um, again, we've servedthousands of families in the 15
(19:18):
years.
We've had over 550 children dieat Ryan House, including my son
Ryan, who took his last birththere in um December of 2018.
SPEAKER_01 (19:26):
Wow, what a powerful experience! And how big is this
place?
SPEAKER_00 (19:31):
Uh, so the house itself is very much modeled
after Helen House in in England.
So it's from a square footageperspective, it's about 12,500
square feet.
It has eight children'sbedrooms, three family suites,
because the first time a familycomes and stays, mom and dad or
the primary caregiver has tostay at the house also.
It always is at least 48 hours.
(19:53):
So it always includes anovernight.
And oftentimes, children onthese medical fragile, you know,
that are have very complexmedical conditions, they've
never been cared for by anybodyother than mom or dad.
Or mom and dad have neverallowed anybody to care for them
other than themselves.
So there's kind of a I describeit kind of as a weaning off
period a little bit whereeverybody just has to get
(20:13):
comfortable.
The team at Ryan House, theyknow how to do tracheotomy care.
They know how to do G tubes andfeeding tubes and transfer kids
from wheelchairs and domedicines throughout the day.
It's really the trust and thejust the nuances of the unique
care of that particular child.
SPEAKER_01 (20:29):
The parents have to come quickly to be able to trust
the team because that's you knowvery very, very difficult for
somebody who's been the onlyones that know how to take care
of their kid.
And now they're gonna say, okay,well, there's somebody else who
knows how to do what we do.
SPEAKER_00 (20:46):
Yeah.
I mean, our older son, our olderson Ethan, able-bodied now 27
years old, he could go stay thenight at a friend's house, a
babysitter could easily care forhim.
But if and there were peoplethat wanted to help us with
Ryan, um, and some people wetrusted to do that with, but a
lot of times it's like if you'renot comfortable moving him, you
could break his bone.
Oh, yeah, he had a lot offragile conditions, you may miss
(21:09):
his medicines.
Um, it it gets very intense.
And for somebody to take on thatresponsibility, they want to
help, but they just can't.
It's just the reality of it.
Um, and so the this house alsohas specialty rooms.
So if you were to take a virtualtour of a Ryan house kind of a
model, not only do theysometimes videos on YouTube for
(21:34):
houses like Ryan House that youcan take virtual tours, but it's
um it's not only do they havethe eight children's bedrooms,
the three family suites, um,because when a child is there
for end-of-life care, thefamilies want to be in that
house.
They want to basically, when achild is there for end-of-life
care, the team at a place likeOrion House um is there to
(21:55):
provide all the caregivingsupport so that mom and dad can
be mom and dad and really focuson the love and the and the just
those memories and just theexperience of the end-of-life
journey.
But there's also specialtyrooms.
So, like there's a music room,there's an art room, a sensory
room, the playground isaccessible.
My son drove a wheelchair so hecould get onto the playground
(22:16):
and enjoy himself.
There was a memorial garden.
So the place was built from theground up for children with
significant medical complexitiesand their families to do this
kind of care.
And there are other communitiesacross the country that have
tried to do this kind of care.
So when we started Ryan House, Ilooked out into the country.
I'm like, come on, we can't bethe only one doing this.
SPEAKER_01 (22:38):
Right, right.
SPEAKER_00 (22:39):
And I discovered there are lots of other
communities and passionatepeople that have heard about
these kinds of models that wantto do something very similar,
but it's really hard.
Um, it's very difficult to raisethe kind of philanthropy charity
dollars that it takes to run aRyan House because again, Ryan
House doesn't charge anything toany, you know, it doesn't charge
families anything for any of thecare.
(22:59):
It is all done through supportand generosity of the Arizona
community.
And it raises three and a halfmillion dollars a year.
SPEAKER_01 (23:06):
End up donating, anyways.
SPEAKER_00 (23:09):
Yeah, yeah, absolutely.
Well, so for Ryan House, itraises three and a half million
dollars a year throughphilanthropy.
The, the, the main, so theseother communities across the
country that have been trying todo this, they really struggle
with trying to raise that kindof level of money to build a
house and to sustain a house.
And so these differentcommunities had yearned for
(23:30):
national leadership.
We'd get together every once ina while as we discovered each
other, and we'd kind of talk andwe'd say, Hey, wouldn't it be
great if there was a nationalleadership?
But nobody was willing to kindof step up and lead this charge
from a national level.
I wasn't willing to do it eitherbecause I through these years
was dad of Ryan.
Right.
You know, I was a vice presidentof marketing trying to support
(23:53):
my own family.
Yeah, I was still very involvedin the board at Ryan House,
sure, and I didn't have time todo it, but then Ryan died.
Right.
And and when Ryan died inDecember of 2018, that changed
everything for me.
Okay, that hit me really hard.
SPEAKER_01 (24:11):
Of course.
SPEAKER_00 (24:12):
Um, and I decided that became the significant
tipping point for me.
I when you have a death of achild, so in in Ryan's last
couple years of life, when hewas 15 years old, we started to
get a lot of um nighttimenursing and home health support
in our house.
Um, and Ryan was cared for.
(24:32):
We were very good champions ofRyan's care and working the
system to be able to helpsupport this.
And a lot of families strugglewith that.
My wife and I became veryexperienced and very effective
at championing the system to getcare for Ryan.
And so in the last couple ofyears of his life, we had five
nights of nighttime nursingcoming into our house.
There was just a a road road,you know, rotation of people
(24:54):
coming in our house all thetime.
That was just life.
But when your child dies, all ofthat stops immediately.
Right.
And then it's quiet.
SPEAKER_01 (25:03):
Yeah.
SPEAKER_00 (25:03):
And the quiet is deafening, it just drives you
nuts because you're just notused to that for 17 and a half
years.
Right.
And and so I really decided thatI got so frustrated at the US
healthcare system that we neededto we need to change the system.
We need to help these models umget open.
(25:24):
And we need to basically whatwe're taking is a child, a model
of care really designed forchildren and families that were
that is trying to fit into aworld really designed for adult
care.
Okay.
And so licensing andreimbursement pathways for to
support these kinds of modelsbeyond philanthropy need to be
rethought about and reframed.
And so I decided that when Ryandied, that I maybe it's the
(25:46):
time, maybe I'm the guy.
Let's let's go for this now.
SPEAKER_01 (25:50):
All right.
SPEAKER_00 (25:50):
I I went back to school.
I decided I I I love parentadvisory councils, but I thought
I had the skill set, the lifeexperiences, the passion to do
something more.
Went back to school, got amaster's in public health so
that I could become a publichealth expert.
All right.
Went to Johns Hopkins, got afabulous education and an
outstanding network that I wasable to now kind of re-emerge as
(26:13):
a national thought leader inthis space.
Wow.
Um, and then what I started todo is kind of um corral these
communities across the countryinto a cohesive, formalized
coalition.
And so we created um, and again,I didn't respond to that.
What's that?
SPEAKER_01 (26:30):
How did they respond to that?
I mean, no, they loved itbecause again, they're
hunger-free for it.
SPEAKER_00 (26:35):
Yeah, they were looking for leadership and
community building and realizingthat they're not alone.
And so what happened was justlike when my wife Holly and I
started Ryan House, we didn'tintend to do it.
People started to aroundsurround us.
The same thing kind of happenedat the national level where
these communities were really,you know, really just looking
for this kind of leadership.
And so it just needed a stake inthe ground to really rally
(26:58):
around.
And so I created that.
So we launched an organizationcalled the National Center for
Pediatric Palliative Care Homes,which is a mouthful.
And so we just refer to usourselves as the national
center.
Yeah.
Um, and then what we did is wecreated an umbrella brand called
Children's Respite Homes ofAmerica.
And we have a website calledchildren's respitehomes.org.
(27:20):
And that really is the morepublic-facing, easier to kind of
remember, children'srespitehomes.org.
That really is a website that isus that really shows you the 41
pioneers and leaders across theUS now, across 28 states that
have now come together, that areall trying to do these kinds of
programs in their own states.
So it's everything up in Seattleto Atlanta to Iowa to New York,
(27:46):
um, Ohio, all across thecountry.
We're helping to support now.
We're we've got basically threemain pillars.
We're trying to bring moreeducation and awareness to these
family journeys and this modelof care.
We're trying to advocate andchange the world.
And really, that's aboutlegislation and policy.
And that's why I went and got amaster's in public health.
SPEAKER_01 (28:06):
To really help in the room, yeah.
SPEAKER_00 (28:08):
Yeah.
So let's we got to change thisat the federal level.
We need to have conversationswith the centers of Medicare and
Medicaid.
We need to have nationallegislation and the Social
Security Act.
And it's that's the stuff I getexcited about now because that's
really the change the worldstuff.
And then at the state level, weneed to change licensing and and
reimbursement payment models,and that gets into weeds in
(28:29):
detail, but that's what I'mdesigned to do now.
And then we also have communitybuilding, which is really about
these leaders in thesecommunities, in these families
to say, you're not alone.
We see you, we hear you, we cansupport you.
Um, and so what I love aboutthese conversations is as you've
got kind of a nice nationalreach also.
(28:49):
So if a family is hearing thisand going, well, I don't live in
Phoenix, I live in Atlanta,Georgia, it's like there is a
program trying to get going inAtlanta.
Um, and so on children'srespithomes.org, we have a map
that you can link to findwherever you are.
We can link to the closestprogram that's developing.
You can get more involved inthat group if you want to get
(29:12):
involved and support themlocally.
If you're interested in in thiskind of a movement and and have
some skills or experience orpassion and want to help change
the world and get involved withus at a national level, we love
that too.
Um, and and that's really whatwe're doing now.
And so I say my son is clearlymy North Star.
He's definitely my fuel and myenergy.
(29:33):
Um, and and that's you know,that's what's going on.
SPEAKER_01 (29:38):
I see that um the information I have says you guys
are on a roadmap to build 50children's care homes in 50
cities over across the next fiveyears.
Yeah.
And so I I know we're runninglow on time, but this is we're
we're doing really well.
I think um I I I don't want tonip this too tight.
(29:59):
Um So you still have the onehome that is functioning.
Are there others that havestarted up yet?
SPEAKER_00 (30:08):
Yeah, yeah.
So the the what we've done is wewanted to showcase the success
that is happening across thecountry.
So 20 years ago, when my wifeand I came back from England,
nothing.
There were none of these in theUnited States.
Ryan House in Phoenix ended upopening as the second one of
these in the United States.
The first one is called GeorgeMark Children's House in a
(30:29):
suburb of Oakland, California.
Also inspired and modeled afterwhat was happening in the UK.
The third house that opened iscalled Crescent Cove in the Twin
Cities in Minneapolis.
And they were also learningabout this model.
They heard about Ryan House.
They came down and visited us inPhoenix, and we kind of helped
inspire a lot of the design ofwhat was going on in
(30:52):
Minneapolis.
Those are the three houses thatare very much the UK Helen House
kind of model.
Okay.
We also have four other programsthat are open in our coalition
that are iterations on thistheme.
They all care about medicallyfragile children.
They're all delivering respitecare in their communities, and
(31:13):
they're all very passionateabout trying to make change like
this.
And so that's uh Salt Lake City,Seattle, South Bend, Indiana,
Chicago, are the other openprograms.
And then what you'll see on ourmap at children's
respitehomes.org are those arethe green dots on our map.
And we want those to be 50 inthe next five years.
SPEAKER_01 (31:33):
Yeah, that's a good starting point.
SPEAKER_00 (31:35):
Yeah, and we want hundreds of them eventually to
be the same scale as the UK.
And then we have yellow dots,which are nonprofits that are
organized in communities thatare currently raising money.
Some of those programs arealready doing some support.
They don't have a physical houseyet to do overnight respite, but
they're already providing somelevel of care or certainly doing
runs and charity events andbreakfasts and galas and raising
(31:59):
money.
So there are ways to getinvolved locally on the yellow
dots for sure.
And then we have blue dots,which are the new pioneers.
Those are the people that haveheard about us, have heard about
this kind of care model and say,oh, we need this in our
community.
And so we have a lot of bluedots.
And then what our organizationdoes is kind of coach and guide
them through how to start anorganization, how to become a
(32:21):
nonprofit, how to form boards,how to, how to really kind of
build this kind of a program andultimately how to advocate with
your state to get this thing tobe sustainable so that you don't
have to depend on philanthropyforever.
And it's um, it just is anamazing.
I mean, we're three years intoour organization now.
We're just getting ready tostart our fourth year.
(32:42):
Um, I wish that we were muchfarther ahead because I've got a
ton of passion and I excitementand I know this is going to take
a lot of years.
But I also reflect back on thelast three years and go, wow,
we've accomplished a lot.
The fact that we've got 41pioneers in programs across 28
states all working together.
We've got amazing governmentaffairs councils with just some
(33:03):
significant national thoughtleaders that want to help make
this change happen.
We've got national advisorycouncils, an amazing board of
directors and supporters.
And so it's a it's a verydifferent day today than it was
20 years ago when my wife and Istarted Ryan House.
We had no idea what was goingon.
SPEAKER_01 (33:20):
Wow.
Wow, you guys have had a as fewpeople I've met have made a
giant impact on the world, justas you set out to.
Well, listen, Jonathan.
Um I'd always like to try towrap things into a parting shot
as a final thought that you knowclearly we have a lot more we
(33:41):
could talk about.
I'd love to have you come backand go deep into some of these
little topics.
We didn't even really discussthe family, yeah, the burden to
the marriage, to the family, andall that.
And there's so many elementsthat we could go deeper on.
But if you've got one messagethat you'd like to send our
listeners with, I'd certainlylove to hear what that sounds
(34:02):
like.
SPEAKER_00 (34:03):
I I think that the the um you know, from a family
perspective, we get it, weunderstand it.
These are very difficultjourneys.
I think that there's a lot oflove and support and and wanting
to help you on these journeys.
And I think that uh from acommunity building, if if you're
listening to this, I'm amarketing person.
(34:23):
My wife was a school teacher.
We are not, you know, we didn'tstart these kind of programs
with an idea that we are policyexperts or business experts.
We just had passion and said weneed to help our community get
this level of caregiving forthese families.
And to those people that reallyare hearing this for that,
there's support for you also.
(34:43):
There's, you know, please checkout children's respithomes.org
to learn more, to get involvedwith us, to um get on our
contact email list.
Um it's just it's a you know, wegot a long way to go in America,
but we're making progress.
SPEAKER_01 (34:58):
Beautiful.
And uh children's so why don'tyou go ahead and give us our
your contact information again?
I I yeah, sure.
SPEAKER_00 (35:05):
The easiest way to try and remember this is
children's respitehomes.org isour website.
And then through that you canget to all of the links and
Facebooks and Linkins and allthat other stuff too.
SPEAKER_01 (35:16):
But beautiful, beautiful.
Well, Jonathan, this has been avery inspiring conversation.
I would certainly love to haveyou back to go deeper into this
and just want to thank you forsharing your time with us.
SPEAKER_00 (35:27):
Joe, this has been great.
Thank you very much for havingme.
SPEAKER_01 (35:30):
Beautiful.
Well, this has been anotherepisode of the Healthy Living
Podcast.
I'm your host, Joe Grumbine, andI'd like to thank our listeners
for making this all possible.
And we will see you next time.
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