January 8, 2024 • 17 mins
I am excited to introduce our listeners to Ami Waggoner who has graciously come on today to tell us the story of her medically complex child Luke and Kathy Derr, founder and director of family engagement for the absolutely fabulous organization everyone should know about — A Kid Again created to provide kids with life-threatening conditions and their entire family with the opportunity to forget about the stress that comes with having a child with a medical condition.
A Kid Again: https://akidagain.org/
Follow Luke: Luke's Mom's Page
Book Or So They Thought: Order Book
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene Lewis (00:02):
Hi there, and thank you for joining us on AVM
Alliance, a pediatric podcastfor families and friends whose
lives have been affected bytraumatic brain injury, rare
disease, brain disorders, orstroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis, and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
A happy new year to all ourlisteners.
As we begin 2024, we areoverwhelmed with gratitude for
(00:45):
each and every one of you whohave been a part of our AVM
Alliance family this past year.
Your support, generosity, andkindness have helped us create a
pediatric AVM aneurysm andstroke community.
Here for each other.
Thank you so much for yourincredible support.
And here's to a year filled witheven more relationships and
(01:08):
victories in 2024 stroke has noage limit.
And if you would like moreinformation on brain AVMs, AVM
Alliance, an official 501c3nonprofit, now has its own
website, www.
avmalliance.
org, and on it you will findlots of information as well as
(01:30):
personal stories.
Also, we wanted to let ourlisteners know that there are
several studies looking forparticipants right now.
For children who had a strokewhen they were born, there is
the I Acquire, used to treat 8to 36 month old children.
For children who had a strokewhen they were 1 month old or
older, there is the T O P P S,transcranial direct current
(01:54):
stimulation option.
It uses a form of stimulation inconjunction with conventional
occupational therapy for armweakness.
And, finally, there is a vein ofGalen Malformation Genetics
Research Study.
Parents whose child has receiveda VOGM diagnosis and wish to
participate are provided aspecial Q tip.
(02:15):
to swab their cheek and thecheek of their child.
If you would like moreinformation on any of these
studies, you can find it on theAVM Alliance website under
Research Studies or email usinfo at avmalliance.
org.
And we will be happy to send youmore information.
And for our internationallisteners with a VOGM diagnosis.
(02:36):
Yes, you are also eligible andencouraged to participate in
this study.
Today, I'm excited to introduceour listeners to Amy Waggoner,
who has graciously come on totell us the story of her
medically complex child, Luke,and Kathy Derr.
Founder and director of familyengagement for the absolutely
fabulous organization.
(02:58):
Everyone should know about a kidagain created to provide kids
with life threatening conditionsand their entire family with
Opportunities to forget aboutthe stress that comes with
having a child with a medicalcondition A KID, again, is a
national organization thatprovides year round activities,
all completely planned and costfree.
(03:20):
They serve parents and siblingsjust as much as the enrolled
child, and they offer groupactivities so that families can
connect and form relationshipsand support one another.
Kathy and Amy, thank you so muchfor joining us.
Thanks for having us.
Yes, thank you.
I just wanted to get started.
Amy, why don't you tell us alittle bit about your story
(03:43):
about Luke's diagnosis and a bitabout what your journey has been
so far?
Ami Waggoner (03:48):
Okay so basically Luke is 16 now.
He was diagnosed withgeneralized idiopathic epilepsy
at the age of 5.
So when Luke got that diagnosis,up until that point, we have
lived a pretty normal life iswhat I would call it.
On the go all the time.
My husband and I both work fulltime jobs.
I actually just kind of thought,hey, he'll take a man.
(04:11):
And as long as he's kind ofcompliant with that medication,
he will be, you know, hisseizures will be controlled and
we'll go on our merry way.
But, that has not been ourjourney at all.
Luke's epilepsy from a veryyoung age from that diagnosis.
He was very difficult to treat.
That first year was justbasically I think back on it.
It was like a nightmare.
(04:32):
The anxiety that just when isthe next seizure happening,
which was daily, nightlychanging medications in the
hospital, out of the hospitaland So about a year into it, I
was just kind of at my wits end.
My family was stressed out.
You know, I was kind of privateabout the whole thing and just
So we didn't have that reallycommunity or support system and
(04:53):
that Luke was in the hospitaland the doctors called us into
the consult room and they'relike, listen, he has gotten
severely worse.
His seizure activity and, youknow, his looks terrible, but
they said, look at this though.
They put that he was on thecamera, the video and they said,
(05:13):
but look, he's having a bigseizure right now.
And look at him.
He's talking.
He's putting together a Lego.
He somehow is adapting to allthese seizures.
So that was just a blessingright there.
And I just thought to myself, Ihave to change my outlook to
help everybody around me.
(05:34):
The way we're living and we'velived this last year.
is we can't do this any longer.
So we are going to find joy inevery minute of everything we do
from now on.
We are not going to let thisepilepsy diagnosis stop us.
We are going to live for themoment.
We're not going to dwell onyesterday or think about
tomorrow.
(05:55):
We are going to dwell on thetimes that we have with Luke
where he's seizure free.
I got involved in his treatinghospital.
We started doing some volunteerwork.
So I kind of found my communityat the age of 12.
He was diagnosed with LennoxGastaut syndrome, LGS.
And LGS is a severe form ofepilepsy where you have many
different seizure types that arevery difficult to control.
(06:18):
So he's 16 now.
Cognitively he acts like he'sabout seven.
He lost a lot of years.
We were talking about a corpuscallosotomy where they divide
the brain to stop those seizuresand actually I had done a lot of
research on the deep brainstimulator and they were putting
these in patients 18 and olderat the time for generalized
epilepsy.
(06:38):
And Luke was actually the firstor second in the U.
S.
a pediatric patient to get adeep brain stimulator for
generalized epilepsy.
It's been a little about two anda half years.
It has been amazing.
It has decreased his seizures byover 50%.
Just letting Luke live his bestlife after everything he's been
through.
(06:59):
All these years just, you know,means the world to us.
So, so when we can get involvedwith, you know, with different
organizations, like a kid again,and we can do some fun things
for him, it just, it makes allthe difference in the world.
Raylene Lewis (07:11):
I'm so glad that the most recent procedure that
you tried worked, you know,Kyler, my son has epilepsy,
which we knew that he was goingto have.
We chose to treat his medicalcondition, which is brain AVM.
And he was having seizures for awhile.
And they said the wordsintractable epilepsy, the doctor
(07:32):
was like, I'm going to try thisone thing, but if it doesn't
work, you know, and knock onwood, he's been seizure free now
for a little over three months,but it's, it's, it's such a
roller coaster, you know, up anddown.
So tell me, how did you getinvolved with a kid again?
So
Ami Waggoner (07:48):
basically I just.
I mean, I'm on a lot of Facebookwith different organizations and
everything.
And it was actually a LGS,Lennox Gusteau Syndrome page,
Facebook page.
I really read through it and Iwas like, Oh my goodness, I
think this would be, you know, agreat organization.
I loved everything they stoodfor and how they involved the
family.
Went on the website and signedup and it's very easy to sign
(08:09):
up.
And so that's, that's always aplus to a mom of a complex
child.
How easy is this going to be todo?
Because it's like, we don't havea lot of time.
So.
Yeah, that's how we kind of gotinvolved.
Raylene Lewis (08:20):
That's wonderful.
I think a lot of People don'tunderstand what it's like to
live with a medically complexkiddo, you know, and I think
every time I hear the doctorstell me, well, your kid is
medically complex.
I just want to roll my eyes andbe like, think, I don't know.
So Kathy, tell me a kid again,seems like a fantastic
organization.
(08:41):
Can you tell me a little bitabout how you got started?
Kathy Durr (08:43):
I'd love to.
Sure.
We've been around since 1995.
And.
I helped start the organizationbecause our oldest son,
Christopher had an inoperablebrain tumor on the brainstem.
And while we were going throughwhat you guys are going through,
realized how blessed we were tobe surrounded by so much love
and support, Christopher passedaway, unfortunately, from having
(09:06):
gone through.
The experience I realized Ineeded to do something to help
other families started again andoff we went.
We started here in Columbus,Ohio with our first adventure
and for those that don't knowadventures is what we call our
advent.
Events that we do for thefamilies and an adventure is a
(09:26):
cost free care, free funexperience for the entire
immediate family to come to.
So siblings are included ineverything that we do because we
recognize the sacrifices thatthey are making when a child is
diagnosed with a lifethreatening condition.
So they are included ineverything we do and treated.
Equally to the diagnosed child.
So we try to think of everythingso that when you come to an
(09:49):
adventure, you don't have tothink of anything.
It's a, a fun filled day withyour family, as well as with
other families.
You become a support system forone another.
And a couple of years ago, wedecided to take this
organization nationally.
And so we started in Texas, aswell as a few other areas and a
very excited about.
(10:10):
How we
Raylene Lewis (10:10):
are growing.
It's so exciting and I thinkit's, it's very needed.
My daughter Rylan is a senior inhigh school this year and she is
going through the collegeessays.
And of course, a lot of heressays are based on growing up
with a brother with a lifethreatening medical condition.
And I just absolutely love thata kid, again, brings in that
(10:33):
sibling aspect and kind of islike a whole family.
experience together.
So who is eligible to enroll?
You said it was up to age 20,right?
Yes, up to age
Kathy Durr (10:45):
20.
The application is on ourwebsite.
Any family that has a child witha life threatening condition.
So there's a wide variety of notso fun diagnoses out there.
We ask on the application whatthe diagnosis is.
And a lot of them are autoqualified.
If we have any questions as towhether it is life threatening
or not, we will contact thefamily.
(11:06):
And we have a medical committeealso that reviews some of those
applications.
Raylene Lewis (11:11):
And I will have the website on this podcast
under the comments, but can youjust go ahead and tell it for me
real quick for our listeners?
Sure, it's at kidagain.
org.
And there is something aboutadventure.
For Kyler's Make A Wish, I mean,we said, What do you want?
And he said, you know, All Ireally want is an adventure.
And I think that's because theyget stuck in their room, in
(11:33):
their bed.
So I think adventure and doingsomething fun just makes a big,
big difference.
And we try to Have in our house.
Okay, if we have to go and havethis treatment or have this
procedure or have this done It'skind of like we got something
that sucks And so we try to dosomething that really doesn't
suck that they can look forwardto but a lot of times for
medical Families that's hardbecause all of our times go to
(11:58):
the go to the medical or theparking garage You know every
time we go I know Kathy that youmust rely a lot on community
support How can people getinvolved with a kid again?
Oh,
Kathy Durr (12:09):
we absolutely do.
We would not exist without thesupport we get from volunteers.
I always say they're thebackbone of our organization,
would love to have morevolunteers.
We would not exist without somevery kind hearted people and
always need more because theamount of families we are
(12:30):
serving is growing so fast.
And you know, if anybody outthere is, is a owns a business
or something that might be anice place to have an adventure,
would love to hear from them aswell.
And all of that can be done onour
Raylene Lewis (12:44):
website.
Fabulous.
And I, yeah, I just want tostress again, even the smallest
adventure can make the biggestdifference.
Anything I think is a hugeadventure for, for some kids,
especially when they, they.
Get left out of so many regularactivities.
And I think it's hard forparents to see kids, you know,
they see their, you know,friends or the kids who are
(13:06):
their age going and doing thesethings that they know will never
be an option.
And that's just another reasonwhy a kid again is so amazing
because it gives themexperiences that they would not
otherwise have.
We're on all
Kathy Durr (13:18):
the handles where Facebook.
huge on Facebook.
We even have private Facebookgroups for our family so they
can talk to one another andexchange ideas and everything on
there.
Raylene Lewis (13:29):
The community aspect, which Amy talked about a
little bit as well, is a bigthing, especially with AVM
Alliance.
That's something that we do toofor our aneurysm, AVM, and
stroke community, you know,hemorrhagic and ischemic.
And it's.
easy sometimes when you're downin the thick of it to forget
that you're not the only onegoing through what you're going
(13:52):
through.
And it's so easy to get lost.
And so to have a connection ofother people, even if it's not
the same medical condition, youcan learn from each other.
You can gain strength from eachother advice, you know, never
underestimate the power ofcommunity just for mental
health.
just
Ami Waggoner (14:11):
that sense of community.
You know, it's so important forme and our family.
But when I look at Luke and he'slooking around at other kids and
seeing their, you know, thechallenges they have and
everything, I just think ithelps so, so much.
So it's been amazing for us.
And yeah, we're just, we justreally, really blessed to be a
part of this.
Raylene Lewis (14:31):
Well, Amy and Kathy, Kathy, I agree
wholeheartedly.
Thank you so much for all you dofor our kids because it does
mean the world and it makes thebiggest difference ever.
And these memories, each one islike more precious than gold.
I'm just being completely honestabout it.
Right now, AVM Alliance isworking to send out stuffies,
stuffed animals.
And so you know, this last weekwe sent out 115 stuffies and the
(14:56):
parents have sent us.
back, you know, pictures of thekids, you know, opening them up
and I'm so happy.
And I get messages about stuff.
He's going to therapy andstuffies, you know, snuggling
while they have to take theirshot.
I hope that our listeningcommunity knows what a
difference it makes, like eventhe littlest thing, because I
think that people who don't havemedically challenged kids don't
(15:17):
understand the power of a Legoor the power of a stuffy or the
power of a card.
I mean, it really can just be.
Anything, but it can take a kidfrom like the lowest low to, you
know, back to normal level of,you know, I'm cared about,
especially because, you know,mom and dad say that they care.
(15:38):
Right.
But that doesn't count.
And it's like, I don't know whyit doesn't count, but I'm just
telling you as a kid, mom anddad caring doesn't matter, but
having, having the, havingsomebody else.
That thought of you, even ifit's somebody that you don't
even know is like, wow, thatmeans I, I actually really may
be special.
You know, you, you actually dowant me to get better.
(16:01):
And that motivation forimprovement and recovery and
therapy, it just makes all thedifference.
So thank you guys.
Thank you so much for joining ustoday.
Ami Waggoner (16:11):
Thank you so much for having us.
Raylene Lewis (16:14):
The focus of this month's Things to Think About is
based on the children's book, OrSo They Thought, written by
pediatric hemorrhagic strokesurvivor Marina Ganetsky.
When a child suffers a stroke,their life changes in an
instant.
They not only have to relearnhow to make their bodies work,
they often lose their pre strokefriends.
(16:36):
Having to lose your body workinglike it always had is hard.
But losing your support networkof friends?
Especially when a child is goingthrough something that changes
their life dramatically.
is even harder.
Marina's inspiring bookillustrates the struggle, hope,
and extraordinary resilience ofchildren who have suffered a
(16:58):
stroke.
She reminds us what it is likefor a child who has suffered a
life altering medical illness,and her book reminds children to
show love for their friends,stressing the need for
inclusivity.
We all need each other.
Thank you, Marina, for remindingus of this valuable life lesson.
(17:22):
And as always, if you havequestions, have a topic you
would like to hear about, don'tbe shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
Hi there, and thank you for joining us on AVM
Alliance, a pediatric podcastfor families and friends whose
lives have been affected bytraumatic brain injury, rare
disease, brain disorders, orstroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis, and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
A happy new year to all ourlisteners.
As we begin 2024, we areoverwhelmed with gratitude for
(00:45):
each and every one of you whohave been a part of our AVM
Alliance family this past year.
Your support, generosity, andkindness have helped us create a
pediatric AVM aneurysm andstroke community.
Here for each other.
Thank you so much for yourincredible support.
And here's to a year filled witheven more relationships and
(01:08):
victories in 2024 stroke has noage limit.
And if you would like moreinformation on brain AVMs, AVM
Alliance, an official 501c3nonprofit, now has its own
website, www.
avmalliance.
org, and on it you will findlots of information as well as
(01:30):
personal stories.
Also, we wanted to let ourlisteners know that there are
several studies looking forparticipants right now.
For children who had a strokewhen they were born, there is
the I Acquire, used to treat 8to 36 month old children.
For children who had a strokewhen they were 1 month old or
older, there is the T O P P S,transcranial direct current
(01:54):
stimulation option.
It uses a form of stimulation inconjunction with conventional
occupational therapy for armweakness.
And, finally, there is a vein ofGalen Malformation Genetics
Research Study.
Parents whose child has receiveda VOGM diagnosis and wish to
participate are provided aspecial Q tip.
(02:15):
to swab their cheek and thecheek of their child.
If you would like moreinformation on any of these
studies, you can find it on theAVM Alliance website under
Research Studies or email usinfo at avmalliance.
org.
And we will be happy to send youmore information.
And for our internationallisteners with a VOGM diagnosis.
(02:36):
Yes, you are also eligible andencouraged to participate in
this study.
Today, I'm excited to introduceour listeners to Amy Waggoner,
who has graciously come on totell us the story of her
medically complex child, Luke,and Kathy Derr.
Founder and director of familyengagement for the absolutely
fabulous organization.
(02:58):
Everyone should know about a kidagain created to provide kids
with life threatening conditionsand their entire family with
Opportunities to forget aboutthe stress that comes with
having a child with a medicalcondition A KID, again, is a
national organization thatprovides year round activities,
all completely planned and costfree.
(03:20):
They serve parents and siblingsjust as much as the enrolled
child, and they offer groupactivities so that families can
connect and form relationshipsand support one another.
Kathy and Amy, thank you so muchfor joining us.
Thanks for having us.
Yes, thank you.
I just wanted to get started.
Amy, why don't you tell us alittle bit about your story
(03:43):
about Luke's diagnosis and a bitabout what your journey has been
so far?
Ami Waggoner (03:48):
Okay so basically Luke is 16 now.
He was diagnosed withgeneralized idiopathic epilepsy
at the age of 5.
So when Luke got that diagnosis,up until that point, we have
lived a pretty normal life iswhat I would call it.
On the go all the time.
My husband and I both work fulltime jobs.
I actually just kind of thought,hey, he'll take a man.
(04:11):
And as long as he's kind ofcompliant with that medication,
he will be, you know, hisseizures will be controlled and
we'll go on our merry way.
But, that has not been ourjourney at all.
Luke's epilepsy from a veryyoung age from that diagnosis.
He was very difficult to treat.
That first year was justbasically I think back on it.
It was like a nightmare.
(04:32):
The anxiety that just when isthe next seizure happening,
which was daily, nightlychanging medications in the
hospital, out of the hospitaland So about a year into it, I
was just kind of at my wits end.
My family was stressed out.
You know, I was kind of privateabout the whole thing and just
So we didn't have that reallycommunity or support system and
(04:53):
that Luke was in the hospitaland the doctors called us into
the consult room and they'relike, listen, he has gotten
severely worse.
His seizure activity and, youknow, his looks terrible, but
they said, look at this though.
They put that he was on thecamera, the video and they said,
(05:13):
but look, he's having a bigseizure right now.
And look at him.
He's talking.
He's putting together a Lego.
He somehow is adapting to allthese seizures.
So that was just a blessingright there.
And I just thought to myself, Ihave to change my outlook to
help everybody around me.
(05:34):
The way we're living and we'velived this last year.
is we can't do this any longer.
So we are going to find joy inevery minute of everything we do
from now on.
We are not going to let thisepilepsy diagnosis stop us.
We are going to live for themoment.
We're not going to dwell onyesterday or think about
tomorrow.
(05:55):
We are going to dwell on thetimes that we have with Luke
where he's seizure free.
I got involved in his treatinghospital.
We started doing some volunteerwork.
So I kind of found my communityat the age of 12.
He was diagnosed with LennoxGastaut syndrome, LGS.
And LGS is a severe form ofepilepsy where you have many
different seizure types that arevery difficult to control.
(06:18):
So he's 16 now.
Cognitively he acts like he'sabout seven.
He lost a lot of years.
We were talking about a corpuscallosotomy where they divide
the brain to stop those seizuresand actually I had done a lot of
research on the deep brainstimulator and they were putting
these in patients 18 and olderat the time for generalized
epilepsy.
(06:38):
And Luke was actually the firstor second in the U.
S.
a pediatric patient to get adeep brain stimulator for
generalized epilepsy.
It's been a little about two anda half years.
It has been amazing.
It has decreased his seizures byover 50%.
Just letting Luke live his bestlife after everything he's been
through.
(06:59):
All these years just, you know,means the world to us.
So, so when we can get involvedwith, you know, with different
organizations, like a kid again,and we can do some fun things
for him, it just, it makes allthe difference in the world.
Raylene Lewis (07:11):
I'm so glad that the most recent procedure that
you tried worked, you know,Kyler, my son has epilepsy,
which we knew that he was goingto have.
We chose to treat his medicalcondition, which is brain AVM.
And he was having seizures for awhile.
And they said the wordsintractable epilepsy, the doctor
(07:32):
was like, I'm going to try thisone thing, but if it doesn't
work, you know, and knock onwood, he's been seizure free now
for a little over three months,but it's, it's, it's such a
roller coaster, you know, up anddown.
So tell me, how did you getinvolved with a kid again?
So
Ami Waggoner (07:48):
basically I just.
I mean, I'm on a lot of Facebookwith different organizations and
everything.
And it was actually a LGS,Lennox Gusteau Syndrome page,
Facebook page.
I really read through it and Iwas like, Oh my goodness, I
think this would be, you know, agreat organization.
I loved everything they stoodfor and how they involved the
family.
Went on the website and signedup and it's very easy to sign
(08:09):
up.
And so that's, that's always aplus to a mom of a complex
child.
How easy is this going to be todo?
Because it's like, we don't havea lot of time.
So.
Yeah, that's how we kind of gotinvolved.
Raylene Lewis (08:20):
That's wonderful.
I think a lot of People don'tunderstand what it's like to
live with a medically complexkiddo, you know, and I think
every time I hear the doctorstell me, well, your kid is
medically complex.
I just want to roll my eyes andbe like, think, I don't know.
So Kathy, tell me a kid again,seems like a fantastic
organization.
(08:41):
Can you tell me a little bitabout how you got started?
Kathy Durr (08:43):
I'd love to.
Sure.
We've been around since 1995.
And.
I helped start the organizationbecause our oldest son,
Christopher had an inoperablebrain tumor on the brainstem.
And while we were going throughwhat you guys are going through,
realized how blessed we were tobe surrounded by so much love
and support, Christopher passedaway, unfortunately, from having
(09:06):
gone through.
The experience I realized Ineeded to do something to help
other families started again andoff we went.
We started here in Columbus,Ohio with our first adventure
and for those that don't knowadventures is what we call our
advent.
Events that we do for thefamilies and an adventure is a
(09:26):
cost free care, free funexperience for the entire
immediate family to come to.
So siblings are included ineverything that we do because we
recognize the sacrifices thatthey are making when a child is
diagnosed with a lifethreatening condition.
So they are included ineverything we do and treated.
Equally to the diagnosed child.
So we try to think of everythingso that when you come to an
(09:49):
adventure, you don't have tothink of anything.
It's a, a fun filled day withyour family, as well as with
other families.
You become a support system forone another.
And a couple of years ago, wedecided to take this
organization nationally.
And so we started in Texas, aswell as a few other areas and a
very excited about.
(10:10):
How we
Raylene Lewis (10:10):
are growing.
It's so exciting and I thinkit's, it's very needed.
My daughter Rylan is a senior inhigh school this year and she is
going through the collegeessays.
And of course, a lot of heressays are based on growing up
with a brother with a lifethreatening medical condition.
And I just absolutely love thata kid, again, brings in that
(10:33):
sibling aspect and kind of islike a whole family.
experience together.
So who is eligible to enroll?
You said it was up to age 20,right?
Yes, up to age
Kathy Durr (10:45):
20.
The application is on ourwebsite.
Any family that has a child witha life threatening condition.
So there's a wide variety of notso fun diagnoses out there.
We ask on the application whatthe diagnosis is.
And a lot of them are autoqualified.
If we have any questions as towhether it is life threatening
or not, we will contact thefamily.
(11:06):
And we have a medical committeealso that reviews some of those
applications.
Raylene Lewis (11:11):
And I will have the website on this podcast
under the comments, but can youjust go ahead and tell it for me
real quick for our listeners?
Sure, it's at kidagain.
org.
And there is something aboutadventure.
For Kyler's Make A Wish, I mean,we said, What do you want?
And he said, you know, All Ireally want is an adventure.
And I think that's because theyget stuck in their room, in
(11:33):
their bed.
So I think adventure and doingsomething fun just makes a big,
big difference.
And we try to Have in our house.
Okay, if we have to go and havethis treatment or have this
procedure or have this done It'skind of like we got something
that sucks And so we try to dosomething that really doesn't
suck that they can look forwardto but a lot of times for
medical Families that's hardbecause all of our times go to
(11:58):
the go to the medical or theparking garage You know every
time we go I know Kathy that youmust rely a lot on community
support How can people getinvolved with a kid again?
Oh,
Kathy Durr (12:09):
we absolutely do.
We would not exist without thesupport we get from volunteers.
I always say they're thebackbone of our organization,
would love to have morevolunteers.
We would not exist without somevery kind hearted people and
always need more because theamount of families we are
(12:30):
serving is growing so fast.
And you know, if anybody outthere is, is a owns a business
or something that might be anice place to have an adventure,
would love to hear from them aswell.
And all of that can be done onour
Raylene Lewis (12:44):
website.
Fabulous.
And I, yeah, I just want tostress again, even the smallest
adventure can make the biggestdifference.
Anything I think is a hugeadventure for, for some kids,
especially when they, they.
Get left out of so many regularactivities.
And I think it's hard forparents to see kids, you know,
they see their, you know,friends or the kids who are
(13:06):
their age going and doing thesethings that they know will never
be an option.
And that's just another reasonwhy a kid again is so amazing
because it gives themexperiences that they would not
otherwise have.
We're on all
Kathy Durr (13:18):
the handles where Facebook.
huge on Facebook.
We even have private Facebookgroups for our family so they
can talk to one another andexchange ideas and everything on
there.
Raylene Lewis (13:29):
The community aspect, which Amy talked about a
little bit as well, is a bigthing, especially with AVM
Alliance.
That's something that we do toofor our aneurysm, AVM, and
stroke community, you know,hemorrhagic and ischemic.
And it's.
easy sometimes when you're downin the thick of it to forget
that you're not the only onegoing through what you're going
(13:52):
through.
And it's so easy to get lost.
And so to have a connection ofother people, even if it's not
the same medical condition, youcan learn from each other.
You can gain strength from eachother advice, you know, never
underestimate the power ofcommunity just for mental
health.
just
Ami Waggoner (14:11):
that sense of community.
You know, it's so important forme and our family.
But when I look at Luke and he'slooking around at other kids and
seeing their, you know, thechallenges they have and
everything, I just think ithelps so, so much.
So it's been amazing for us.
And yeah, we're just, we justreally, really blessed to be a
part of this.
Raylene Lewis (14:31):
Well, Amy and Kathy, Kathy, I agree
wholeheartedly.
Thank you so much for all you dofor our kids because it does
mean the world and it makes thebiggest difference ever.
And these memories, each one islike more precious than gold.
I'm just being completely honestabout it.
Right now, AVM Alliance isworking to send out stuffies,
stuffed animals.
And so you know, this last weekwe sent out 115 stuffies and the
(14:56):
parents have sent us.
back, you know, pictures of thekids, you know, opening them up
and I'm so happy.
And I get messages about stuff.
He's going to therapy andstuffies, you know, snuggling
while they have to take theirshot.
I hope that our listeningcommunity knows what a
difference it makes, like eventhe littlest thing, because I
think that people who don't havemedically challenged kids don't
(15:17):
understand the power of a Legoor the power of a stuffy or the
power of a card.
I mean, it really can just be.
Anything, but it can take a kidfrom like the lowest low to, you
know, back to normal level of,you know, I'm cared about,
especially because, you know,mom and dad say that they care.
(15:38):
Right.
But that doesn't count.
And it's like, I don't know whyit doesn't count, but I'm just
telling you as a kid, mom anddad caring doesn't matter, but
having, having the, havingsomebody else.
That thought of you, even ifit's somebody that you don't
even know is like, wow, thatmeans I, I actually really may
be special.
You know, you, you actually dowant me to get better.
(16:01):
And that motivation forimprovement and recovery and
therapy, it just makes all thedifference.
So thank you guys.
Thank you so much for joining ustoday.
Ami Waggoner (16:11):
Thank you so much for having us.
Raylene Lewis (16:14):
The focus of this month's Things to Think About is
based on the children's book, OrSo They Thought, written by
pediatric hemorrhagic strokesurvivor Marina Ganetsky.
When a child suffers a stroke,their life changes in an
instant.
They not only have to relearnhow to make their bodies work,
they often lose their pre strokefriends.
(16:36):
Having to lose your body workinglike it always had is hard.
But losing your support networkof friends?
Especially when a child is goingthrough something that changes
their life dramatically.
is even harder.
Marina's inspiring bookillustrates the struggle, hope,
and extraordinary resilience ofchildren who have suffered a
(16:58):
stroke.
She reminds us what it is likefor a child who has suffered a
life altering medical illness,and her book reminds children to
show love for their friends,stressing the need for
inclusivity.
We all need each other.
Thank you, Marina, for remindingus of this valuable life lesson.
(17:22):
And as always, if you havequestions, have a topic you
would like to hear about, don'tbe shy.
Share it in the comments and letus know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
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