April 9, 2024 • 41 mins
Say hello to Arlee and Abel!👋youÂ
Arlee (7) and Abel (3) are from Gregory, Michigan where they enjoy spending lots of time outdoors!
Their life, like any other, is filled with moments of joy, laughter, and love. Yet, their journey is also marked by resilience, strength, and the unyielding bond that holds them together, especially in the face of challenges posed by a rare condition called Friedreich's Ataxia.
Throughout April, we’ll be shouting love for these two to help raise awareness and financial support for a reliable vehicle to transport them to and from appointments in Philadelphia.
We invite you to listen to a conversation with their parents, Becca and Myles.
Arlee (7) and Abel (3) are from Gregory, Michigan where they enjoy spending lots of time outdoors!
Their life, like any other, is filled with moments of joy, laughter, and love. Yet, their journey is also marked by resilience, strength, and the unyielding bond that holds them together, especially in the face of challenges posed by a rare condition called Friedreich's Ataxia.
Throughout April, we’ll be shouting love for these two to help raise awareness and financial support for a reliable vehicle to transport them to and from appointments in Philadelphia.
We invite you to listen to a conversation with their parents, Becca and Myles.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hi, I'm Arley. I wasborn in sixteen two fans not my place,
EPs, nanny, I'm sing oldold. My favorite food is pizza.
(00:24):
My favorite movie is Elmento. Ihave a favorite space It's Mars,
and I like kissing and nance inCutler, I asked, oh, like
I to ride horses because unicorns aremy favorite A mob and I have two
(00:53):
siblings. I'm the oldest. It'sSEVENI and sold my other and sister or
five and free and I have freetaxia. It's hard to walk up that
I still am going for a whattyou're going through it? Is there anything
(01:15):
that you have to do because offreeedrics a taxi that most kids don't take
a lot of blood draws? Ittakes a lot of blood draws. Is
there anything that you would like totell somebody who has friedrics, a taxia
or any other challenges that will helpyou help them have prejuts a taxi?
(01:37):
You just had to be braved andhow to get through? My brother helps
me? Does my sister what didshe do? Well? See En asked
me that I'm a tough after mmhmastic anxiy. You just heard from Arley,
(02:04):
one of our two future kiddos forthe month of April twenty twenty four.
The other is her brother Abel.Whenever we can, we love to
hear from the kids themselves and couldn'thave started this episode any better than with
Arley. Welcome back to the GoShut Love podcast. Today we are talking
with Beca and Miles, the parentsto Arley and Abel and their little sister
Annie. We are beyond grateful forthe time we get with these families,
(02:28):
either in person or virtually. However, we are at the mercy of technology,
which occasionally just doesn't cooperate. Becaand Miles were gracious enough to talk
to us on their way to awell earned family vacation, and we recorded
this episode when the signal was notat its best. That being said,
we have cleaned it up as bestas we could and are ready to share
their journey with you. I encourageyou, even in moments when it might
(02:52):
be difficult to understand what is beingsaid, to please stick with it.
If you do, you will getto hear an incredible story about their journey
as a family and the medical challengesof their adorable kids. Leading this conversation,
as Josh Feach, the executive directorof Go shout love as always.
Please share this podcast and help usshout love as loud as possible. Becca
(03:15):
and Miles, thanks for joining meon the Go Shout Love podcast. It's
so great to have you, andwe're excited to hear from your family and
kind of introduce and learn about whatyou guys are going through and meet your
kids. So let's start there,Becca, introduce your family to us and
tell us their names and ages.Sure, So in our family we have
(03:37):
Miles. He's dad and he's doyou want to know how old he is
too? I mean, if youwant to out him like that. That
was not a directed question to putanybody on the spot there, So I'll
leave that. You know, youguys have a car ride ahead of you
still after you talk to me,so I won't. I'm gonna let you
make that call. So we're inour thirties and I'm I'm We have Arley
(04:00):
who is seven, she'll be eightin October. Annie is five, she'll
be six in July. And abljust turned three in December. All right,
so they are a good kind ofyou know, two years apart.
Let's go into just tell me aboutthe dynamic of those kids and how how
(04:21):
like what they uh two years apart? Is that? Is that a fun
age gap or is that a likeyou know you answer that how you will?
Sure? So two years apart isI would say chaotic mostly but alsome.
They love playing with each other,but I think the closeness and age
(04:43):
also lends for some significant arguments ordisagreements, and just you know, they're
still learning how to share all ofthem and so every time they get good
at sharing with one, then another, you know, another one came into
the picture. So, but thegirls are great big sisters. They absolutely
love taking care of their brother andeach other. Annie is definitely she's our
(05:03):
middle girl, our middle girl.She's the motherly type, so she's always
trying to mother Arlie and abel Sothere's definitely that kind of danyamic where Harley's
like, you're not my mom,and then abel Able typically likes when Annie
helps him out. Let's see,Arley loves to play and kind of be
(05:28):
in charge. She has that typicaloldest kiddy playing a lot of the games
up usually play along for fairly welland then as our joke start, he
loves to make everybody laugh all thetime. Awesome. He he does a
really good job playing with both bothgirls, and like typical brother fashions for
(05:54):
our family, he likes to tickon his sister, so he likes to
kind of rile them out when hecan't. Yeah, so being the youngest
doesn't stop him from learning to pushbuttons like know what buttons to push and
get the reaction. Yeah, that'sawesome. Typically very sweet and kind to
them, but he does like too. That's what brothers I think in general,
(06:16):
are for, right, I mean, that's kind of what we do
all right. So if you hadto describe each of your kids in just
three words, what would you sayabout each of them? So we said
that Abel is fun loving and energetic, and fun loving and energetic, and
(06:39):
he is spunky Andy Annie is sweetand cutting and full of all of the
emotions and boy, and she getsangry. She's really but she's just full.
She's so full of emotion. Andthen I really is carrying an artistic
(07:00):
like her own person. She's veryunique and so I would love to know
as a family, what does whatdoes fun look like? What do you
guys do for fun? Well,we love to be Miles grew up outdoors,
as did I, and so wealways enjoyed being outside with our family.
(07:24):
Live on the lake, a smalllakes so usually typically we're always outside
of the lake. In the summer, we're at the beach like every single
day, so the kids love tobe outside of the beach in the water
the wintertime fudding and snowing or likeanything stuff. I really loves dancing and
(07:46):
music and singing and crying and loveto play more games in the Usually just
pretty content if we're all this todoing something together. For the most part,
that's like tagets side and are justwrestling with dad at the beginning.
Usually that's what our fun looks like. Yeah, any any good reason to
(08:07):
get out of the house. Tellus a little bit about when I'm assuming,
since Arlie is older, you probablyshe started presenting some things of concern
first, So let's start there andkind of what what happened or what did
you notice that was of concern thatkind of starred you guys down this journey.
(08:31):
So she was probably about two anda half when we first started really
noticing some like physical challenge, solike she was tripping very often, she
was struggling to run and jump andtime up the stairs like she did one
of the big things was we werejust walking back to the boat and she
kind of just like sat on theground and just didn't want to walk anymore.
(08:54):
She was just so tired. Atthat time, we thought, you
know, she was being too inhalf, but looking back, I could
definitely tell that, like she wasjust like fatigued. We'd been playing out
onside all day and she was justreally really tired. And then we got
her into some physical therapy and thenshe kind of gain a little bit of
(09:15):
shrink back and then lose it,you know, a little shrink back and
lose it. So right on tuningcaps we kind of noticed things starting and
then as she got older and withphysical therapy we thought they would kind of
improve, but they either like remainedthe same or some of her like gross
mumps skills got weaker or like morechallenging for her to do. And so
(09:39):
how did you what was the nextstep in trying to figure out if this
is just something you know that needssome extra pte versus there's something going on
under the surface. Sure, sowe did PET for a few years,
and my sister is a pediatric physicaltherapist, so tough to do and maybe
(10:03):
kind of something to look out forto see if like they weren't getting better.
She looks far enough a way thatshe can help directly, but more
like consultative. So after physical therapypropped her like two years on and off
for two years, noticing things arejust getting better and she was just small
(10:26):
for her size, and we kindof pediatrician then who reached out to do
neurology and just to see if there'sanything that you look forward genetically to see
if like what was causing the weakness, and then neurology we went there and
(10:46):
then they ran a ton of genetictests. The course of propatis constant.
So I did some X rays andan electric basically essentially like a shock test
to test to see if her nervesand her legs for responding to stimulation.
(11:07):
She didn't like, thankful for her, but we did a couple of those
tests and MRI and kind of everythingback after like a year of looking for
a reason, it was it couldn'tlike they're diagnosis, but they couldn't find
anything. We have to wait ofscience caught up. So geno man excellent
(11:33):
and there no no results nothing correct. Yeah, So when they when they
suggested that we wait for a coupleof years, Miles and I decided that
that really said sit well with us, and so we went to Cincinnati.
They're renowned for finding genetic imperfections orgenetic diseases. So we went there and
(11:58):
he kind of said, well,our neurologist said, he said, I
think it could be this one thingwould be rare, he said, Or
it could be that we just don'tknow what that. It could be this
fredrics a tatoo, which is reallyrare, or it could be something we
don't know yet. So if thiscomes back negative, also due to like
the National Institute of Health, andthey can run some testic kind of look
(12:20):
at and so then they ran thegenetic test that came back positive for fordis
ataxia. So that's where we stayedto State at So I just want to
jump back to your total time interms of trying to figure out a diagnosis.
That sounded like, was that threeyears plus that you guys were kind
of watching and looking to see whatwas going on? Yeah, I think
(12:46):
the first two years were definitely we'remore kind of just assuming that physically she
was just going to be a slowerprogressing child, and we weren't necessarily too
concerned when she was younger. Onceshe kind of hit like three and a
half four, that's when we reallystarted just becoming more wary of like,
(13:07):
we don't think this is just likeshe's having a hard time physically. Kind
I tell that you would like,So starting at four is when we really
started looking for a diagnosis. Andthen she was diagnosed in January January of
(13:31):
twenty twenty two. Is that you'rethe best six So about two years for
like a movie earth, Yeah,let's uh so going to the diagnosis,
can you tell us what that isand just in a few like in Layman's
(13:52):
terms, what that is doing tothe body, because I'm assuming you,
like most parents, at this point, you've become an expert on them on
in medical you're a medical expert,whether you sign up to be one or
not, because you've done all theresearch and you're doing all the appointments and
stuff. And so for someone who'slistening who's never heard of that diagnosis before,
tell us just what that is andkind of in Layman's terms, what's
(14:15):
going on in the body. Sure, So I still don't feel quite like
a medical expert in it, butthere's just so many facets to this disease.
So the general idea is putrix oftaxia is a neuro muscular condition that
affects for taxin in the kids bodies, so their bodies are not making enough
(14:43):
for taxon. And then it's ata cellular level, so and the mitochondria
needs for taxing all of the cellsyour body needs for taxon. So for
bodies not making enough of this andthe cells essentially oxidating and and buying so
(15:05):
or the mitochondria, because it's notgetting enough, isn't producing the right type
of like proteins needed in the bodyfor specific types of cells. So what
it kind of looks like for ourkids is that there's muscle weakness, and
there's so her muscle our muscles specificallyare weaker in her legs and her able
(15:35):
I'm assuming we'll get that away,but he's currently unaffected to see what else
all of those things out. Andthen the neuro part of it is that
freedish taxia causes a taxiad balancing issues, so walking and just body do what
(15:56):
you're wanting it to do. Getthere's the loss of signal between your brain
and what your prostiles are are gotcha, okay, and so that you you
just mentioned there that that able alsotested positive and so this is because this
(16:17):
is a genetic thing. Uh youguys, I'm assuming god everyone tested,
uh to see kind of where didthis come from? When is there anything
else that you know to be awareof? And so uh, just to
clear kind of fill that part ofthe story in Oh yeah, so when
we Myles also was saying that whenwe found out that it's what for you
(16:41):
taxia is he said that you wantedto mention that it's a progressive scene.
So when we first found out aboutit, it's progressively and like shortening.
So out of treatment there's nothing orstopped the disease from happening, the life
(17:03):
pres affected. And then with thegenetics, Yeah, with genetics we've got
any ury and tested to found outthat Hourly tested positive. I think I
believe the next step was to getMiles eye tested as well as the kids
too. There is a rare chancethat we could have both had freaking cap
(17:29):
as well. There are some caseswhere people present extremely later in life,
like in their thirty So we gottested both Miles and our carriers, so
or for the kids too, havetaxi they both had to have the recessive
being from miles and I. Essentiallythat looks like they had a twenty five
(17:52):
percent chance of not being a carrieror having freaking taxi a fifty percent chance
of being a carrier, are twentyfive percent chance of having drift caaxia.
So we've got that orely Any isat a carrier or does she have redricts
to taxio so she does not haveany chance of her kids one day if
(18:17):
she having that progressive word is atough one to swallow, especially after you've
been on a couple of year journeyof figuring out what's going on. And
so I'm curious, how did youguys navigate that? It's a I'm sure
one that's you're still navigating, Iwould assume, But you know, what
do you uh kind of where doyou look to to process that? Well,
(18:45):
mean pretty heavily on mild and ourfaith, I mean the progressive Yeah,
it's hard. I feel like weare kind of something kind of in
the state of watching for like what'sgoing to happen. That's like, what's
(19:06):
the next thing that's happened? Likethat a sense of calm or a sense
of like peace about it because weknow that it's it's not going to stay
this way forever. Like, soif we're in a good spot right now,
we kind of just have to reallyfocus on just enjoying what we have
today and having faith that God willprovide us for whatever we need that comes
(19:33):
to the future that we're going totake kind of today as it comes.
I do I heavily arm Ailes andsome of our close family friends and our
family to get us through those timeswhere like something new is happening, or
you know, results from like bloodwork or scans or things like that are
(19:53):
coming back showing progression. That's alwayskind of tricky. Those doctor's appointments that
we have each kind of give mea lot of anxiety, and Miles really
helps me kind of calm down.Yeah, Ultimately, it's just relying on
faith and faith and like Beco issaying, you know, kind of close
(20:15):
family friends. Yeah, And Iwant to I'm going to come back to
that piece of it, especially thefamily friends and the relationships here in just
a minute, because one of thethings that we hear so often from families
is how important community is. AndI'm we've found that that's true in the
diagnosis space when you are able toconnect with a group of people that,
(20:38):
especially when what you're going through isextremely rare to find other people. A
lot of times people talk about Facebookgroups where that they connect with not only
information and get knowledge from those groups, but also true relationship because they're navigating
something very similar that very few peoplecan actually relate to. But then also
(20:59):
that just personal connection of family andfriends. We're gonna come back to that
in just a second, because Ithink that's a big piece of their story
that I want to hear about.But I do want to know. So
going back to Abel also testing positive, how has that presented any uh,
anything presented for him yet? Andhow do you how do you go about
(21:22):
now that you know in advance?Is there anything in place to help I
know you said there's no cure orspecific treatments, but are there Is there
anything that's come out yet that's beenable to at least slow progression or delay
any sort of onsets that now thatyou know that with early detection for him
might be helpful. Yeah, Ohso I do want to backtrack there.
(21:45):
There is FDA did approve a nota cure, but it's a treatment kind
of slow the progression. However,it's only approved for sixteen and up,
so kids Crown the editors sixteen yearold. Currently. Right now we're in
a clinical trial and the idea ofthe clinical trial is too oh yeah,
(22:10):
there's some of the youngest kiddos init. Able is actually I think one
of the youngest ones who's in thisclinical trial. But this so this clinical
trial that we're in, the pointof the clinical trial is to slow the
progression. They found some data onit that it delays are right, it
(22:32):
increases like their longevity of walking byit said, So it's kind of hard
hell for exactly how Yeah, butthey said clinical trial drugs that they're on
currently hash people who are walking amulatory. That's currently what the kiddos are on.
(22:56):
They're trying to see if there's anythere's no benefits for younger kid is
that I'm But as far as progression, I know some people do diets and
things like that. One of thebig things that the doctors and other parents
have said is just keep them activefor as long as they can and just
(23:17):
and kind of increase their steam andand increase their muscle mass before the disease
kind of really takes full because onceit does them, the fatigue picks in
and it's really hard kind of freakingmuscle or be not tired enough to take
to continue to exercise. Sorry,could you hear me? Yeah? Sorry,
(23:38):
I was losing a little bit.So I turned your video off just
to see if that would help alittle bit. So I think what I
want to make sure that I gotwhat you were saying. There the gist
of it. So there's the FDA. There's recently been some approved medication that
is at least going to help withsome of the onset. Is that what
(23:59):
you said? So the FDA drugthat has been approved helps slow down the
the quick progression of the disease.So what they said was they do it
by a standard of like a specificthey call it the ampphires, which is
a up rating scale. So theyfound that this drug is able to keep
(24:26):
the disease kind of at bay oran extended period of time. And I
exacinitely sure at this point in time, because it's it's kind of new and
especially pediatrics, how long they cankind of hold the disease at bay.
But it definitely slows the progression ondrug, it will do progress, but
they found through natural district studies,they're not progressing as quickly. Gotcha okay,
(24:51):
So so good news in the front, like there's there's progress happening in
the research. Yes, there's lotsof research, even in like the ver
beginning phases of resource animals and thingslike that. There's a lot of stuff
that's coming out. They just knowthat it takes file to get to human
phase and then even longer to getto the kids. So this drug has
(25:15):
been approved for just over a yearand they still have it up with patric
trial, so adults have been ableto take this drug for about a year.
We're just kind of waiting. We'rewaiting for the FDA to kind of
allow the pediatric trials to start onthis specific drug and hopefully some other drugs
(25:36):
coming up to gotcha okay. Andyou said that that both arely and able
are currently in a clinical trial,right, and how long are they How
long does that go for the clinicaltrial? When we started it was seventy
two weeks. We are been awhole year, so we've been in it
(26:03):
for a year, and then onceour seventy two weeks is up, depending
on what's coming, if there's anymore clinical trials. Now we have the
option to continue that clinical drug andI think they call it an extension study,
and so it's not as intensive ofbusiness or things like that, but
(26:26):
you still have to go in andget them checked out, and that's the
only place we get the this thatthey're on, the drug that they're on.
One of the aspects of kids dealingwith rare medical journeys that I think
tends to not be discussed as muchis some of the unseen tolls that it
has on them, like the mentaland emotional impacts. And I'm just you've
(26:48):
mentioned in a previous call that that'ssomething that especially Arlei has had to face
some and so I wondered if youwould just kind of share a little bit
about how that's impacted your family andand how you're navigating that. One of
the hardest hearts about the disease isusually the like unseen things, especially for
(27:10):
Aurie, who is old enough tounderstand that Friedrich's a Taxia makes her look
different or look different physically, andthen she just for us, you know,
we can talk to her about likewhy it happens and the physical things
(27:32):
of that, but it's really hardwhen you know, she asked these questions
about like why it happens to herand things like that, where we don't
have the answers or big questions likewell, when is it going to be
fixed and things like that. Soour biggest thing that we rely on is
is just it's God's plan for her, and God always has a good plan,
(27:57):
even though sometimes there's stuff like hardseasons, and we just have to
trust that. We also tell herthat she's beautiful and has all these other
she has all these other qualities abouther that are absolutely wonderful and not affected
by Friedrich's ataxia, and so wereally try to play on her strengths as
(28:19):
far as able. He's still tooyoung to understand any of that yet,
so we feel like we'll have abetter idea of how to handle that as
he gets older, just because we'vebeen through it once. I think a
lot of people on the outside focuson medical treatments and how we can heal
(28:44):
or get our child better. Theydon't often realize that our early knows that
something's wrong with her and that sheis falling behind her peers as well as
her sister Annie physically. It's veryhard as a parent to see her child
fall and cry on a daily basis, just to be or be just downright
mad disease that has no cure.We as parents continually tell her how love,
(29:11):
beautiful and unique she is and thatshe has made perfect in God's image.
In an earlier conversation, you'd mentionedBecca, how impactful the relationships in
your lives have been in being asupport network for your family. So just
briefly touch on who those people areand what they've mean to you and how
they've helped you navigate this rare medicaljourney that you're that are really enabler on
(29:36):
For me, I think if Ididn't have the support system that we did,
this whole journey would have been muchharder. I've been able to lean
on my family and my friends andour close friends from church to help mostly
(30:03):
just grief with and talk things over. I've been able to talk with my
family just about like what this lookslike in our future, and just sharing
some of our concerns and fears.We've also talked about like what family vacations
are going to look like, ormaybe things that we need for our home
(30:26):
period. We've also been able totalk about people in our church about just
how we deal with this as afamily, making sure that we're supporting our
kids in the right way and toschool or find God through all of it.
(30:51):
They've been a wonderful resource for usas well, and my friends have
just really been there to support meand help me. If I'm trying to
find certain information on topic. Beinga rare disease, it's really hard to
find a lot of good reliable research, and so it's been great to have
(31:18):
friends who've in family who've helped dothat. Also, just like whenever I'm
kind of feeling down or sad oranything about that, usually my sister,
my mom, and my mother inlaw are usually always there to help make
(31:40):
grief through that and also to kindof lift me back up. Obviously,
my ales is who I talk tothe most about the whole thing, and
he's just been so strong and supportivefor me, you know, being able
to for us to sit in thesadness kind of, but he also was
(32:04):
able to pull us forward and justhelp us live each day with as much
joy as we can. It wouldbe a very dark small world without our
family, friends in church railing aroundus and being such an incredible support system.
I'm hesitant to name people for fearof leaving somebody out, but just
(32:27):
to name a few that really cometo mind. My sister Katie, My
sister in law is Rachel and Amanda. My brother in law is Derek,
Bill and Patrick. My parents Davidand Christie. My father in law Bruce
who passed away a few years ago, and his wife Tish, my grandmother's
just really all of our extended family. Also my pastor Jeff and our church
(32:52):
at church family at Emmanuel Bible Church, just as well as countless others.
These people have all touched their livesand really unique ways, and we're incredibly
humble and just forever grateful for allof them. Another huge support for me
has been the Friedrichs a Taxia Facebookpatient pages for families in Michigan, as
(33:19):
well as the Friedrichs Taxia Parent groupthat has a huge amount of parents with
children who have free drinks Ataxia fromall around the world. I'm able to
post questions there, and it's aforum where other parents can give answers,
(33:40):
and or I can help other parentsgive answers, get answers, or we
can share resources. Period. That'sbeen really helpful for maybe different questions that
arise, So it's just like,hey, this happened to our kids?
Is this something that we typically seein FA? Has anybody else I very
experienced this? It also just helpsus feel not so alone in the whole
(34:07):
disease journey, the Fujik's text YourJourney. Just knowing that there are other
parents out there who are going throughthe same thing and maybe have already gone
through parts of this is really comfortingto know that that we're not alone.
(34:28):
I have a couple of parents whohave young kids, so who are really
walking kind of in the same shoesthat we're walking in, and we have
their phone numbers and were able tokind of text back and forth just talking
about different things like what's the bestwheelchair to get, or the best types
(34:51):
of shoes that embraced as well,or has anybody ever heard of this kind
of complication? Or what about thesetest results? And just there's not that
much data online and so when weget some of these things, our answers
can be really hard to find.But it's been really nice to have other
(35:15):
parents who are going through the exactsame thing. So that's been a huge
support to me as well. AllRight, so I have just a couple
more questions for you, guys,and this is one that if you're okay
with it, I'd love for youboth to answer. What have ourly and
able taught you about life? Ourreally enable have both taught me that life
(35:38):
can change in an instant and justreally to take each day as it comes
and enjoy it. They've taught meto be uh, just be resilient and
just stay positive no matter what.Well, I think that kind of all
kids, all of our kids helpwith this. I mean, they're just
(36:01):
it's so fun to kind of watchthe world and kind of experience all of
the wonderful things that we have andthat we get to do together through their
lens, like, for example,something as simple as just running through big
mud puddles in our yard and justhaving them laugh and just be silly and
(36:28):
totally content in the moment. It'samazing to watch and kind of we've definitely
learned to be content and enjoy everymoment that we have. When you get
(36:53):
a progressive diagnosis, it really justmakes you slow down and really not take
anything for granted. So you know, sometimes we're tired and exhausted at the
(37:14):
end of the night and Aurley justwants to snuggle up and chit chat for
a while before she goes to bed. And you know, we still have
lots of other things in our todo list, but after you know the
diagnosis, we really have tried toslow down and just takes more time to
(37:36):
be together and not focus so muchon the to do list as much as
just being together and Able has justbrought so much joy and humor and silliness
(37:59):
into our life. So just beingmore silly, I think is about able
has taught me because you can neverhave too much joy or laughter. And
the last one for you, guys, and again, if you're open to
it, I'd love for you bothto answer what makes you most proud to
be their mom and dad. I'mjust really equally proud of all my kids.
(38:22):
They're all distinctly and beautiful, unique. It's been one of my greatest
joys in life to be their dad. This fa Friedrich to Taxia will always
be part of our family's lives,but I just really refuse to let it
define who we are as a family. I am so proud to be their
mom and dad. Women, theymake me proud every day. I'm not
(38:45):
sure if I can really pinpoint whatmakes me the most proud. I think
I'm the most proud of my kidswhen they're just sharing God's love and being
(39:09):
kind and joyful and compassionate, whenthey're helping other people, when they're showing
grit and tenacity where they don't giveup on something, I think that's when
(39:29):
I feel the most proud. Iwant to thank you guys so much.
I know that taking a little bitof time, especially on your on your
vacation as a family, to carveout this conversation is tough and a little
bit of extra added stress, SoI thank you so much for your willingness
to do that and join us here. We're right around the corner from April,
(39:52):
and I'm super excited to be ableto introduce your awesome family to the
goshout Love community and I know thatit's going to be a great month of
shouting loud for your family, andI hope you'll feel the love from people
across the country as they are,you know, making a difference and helping
you guys, and just learning abouta new diagnosis and new kids and how
(40:15):
great they are. And so thankyou so much for joining me and sharing
your family with us. We appreciateit. We just want to say thanks
for taking the time out of yourday to listen to this podcast and just
having the interest in our family andour journey through this. We appreciate all
(40:38):
of your support financially and just relationshipand our relationships and spiritually. Thank you
for all of the prayers and relishesthat we've gotten so far as well.
At go shout Love, we doamazing things for amazing families with kids on
(41:00):
medical journeys. Each month, weShout Love for families through the sale of
creative apparel inspired by the kids.This month's Together is the Best Adventure design
is inspired by Arley and Abel,amazing siblings at different stages may shared rare
medical journey. Every purchase in Aprilwill go to help Arley and Able's family
(41:23):
save up for a more reliable vehicleto make their drives for appointments clinical trials
safer or comfortable, and eventually beable to convert to a wheelchair accessible when
needed. Visit our website go shoutdot Love to support Arlei and Able through
the purchase of a T shirt,pet hoodie, or other items.
Hi, I'm Arley. I wasborn in sixteen two fans not my place,
EPs, nanny, I'm sing oldold. My favorite food is pizza.
(00:24):
My favorite movie is Elmento. Ihave a favorite space It's Mars,
and I like kissing and nance inCutler, I asked, oh, like
I to ride horses because unicorns aremy favorite A mob and I have two
(00:53):
siblings. I'm the oldest. It'sSEVENI and sold my other and sister or
five and free and I have freetaxia. It's hard to walk up that
I still am going for a whattyou're going through it? Is there anything
(01:15):
that you have to do because offreeedrics a taxi that most kids don't take
a lot of blood draws? Ittakes a lot of blood draws. Is
there anything that you would like totell somebody who has friedrics, a taxia
or any other challenges that will helpyou help them have prejuts a taxi?
(01:37):
You just had to be braved andhow to get through? My brother helps
me? Does my sister what didshe do? Well? See En asked
me that I'm a tough after mmhmastic anxiy. You just heard from Arley,
(02:04):
one of our two future kiddos forthe month of April twenty twenty four.
The other is her brother Abel.Whenever we can, we love to
hear from the kids themselves and couldn'thave started this episode any better than with
Arley. Welcome back to the GoShut Love podcast. Today we are talking
with Beca and Miles, the parentsto Arley and Abel and their little sister
Annie. We are beyond grateful forthe time we get with these families,
(02:28):
either in person or virtually. However, we are at the mercy of technology,
which occasionally just doesn't cooperate. Becaand Miles were gracious enough to talk
to us on their way to awell earned family vacation, and we recorded
this episode when the signal was notat its best. That being said,
we have cleaned it up as bestas we could and are ready to share
their journey with you. I encourageyou, even in moments when it might
(02:52):
be difficult to understand what is beingsaid, to please stick with it.
If you do, you will getto hear an incredible story about their journey
as a family and the medical challengesof their adorable kids. Leading this conversation,
as Josh Feach, the executive directorof Go shout love as always.
Please share this podcast and help usshout love as loud as possible. Becca
(03:15):
and Miles, thanks for joining meon the Go Shout Love podcast. It's
so great to have you, andwe're excited to hear from your family and
kind of introduce and learn about whatyou guys are going through and meet your
kids. So let's start there,Becca, introduce your family to us and
tell us their names and ages.Sure, So in our family we have
(03:37):
Miles. He's dad and he's doyou want to know how old he is
too? I mean, if youwant to out him like that. That
was not a directed question to putanybody on the spot there, So I'll
leave that. You know, youguys have a car ride ahead of you
still after you talk to me,so I won't. I'm gonna let you
make that call. So we're inour thirties and I'm I'm We have Arley
(04:00):
who is seven, she'll be eightin October. Annie is five, she'll
be six in July. And abljust turned three in December. All right,
so they are a good kind ofyou know, two years apart.
Let's go into just tell me aboutthe dynamic of those kids and how how
(04:21):
like what they uh two years apart? Is that? Is that a fun
age gap or is that a likeyou know you answer that how you will?
Sure? So two years apart isI would say chaotic mostly but alsome.
They love playing with each other,but I think the closeness and age
(04:43):
also lends for some significant arguments ordisagreements, and just you know, they're
still learning how to share all ofthem and so every time they get good
at sharing with one, then another, you know, another one came into
the picture. So, but thegirls are great big sisters. They absolutely
love taking care of their brother andeach other. Annie is definitely she's our
(05:03):
middle girl, our middle girl.She's the motherly type, so she's always
trying to mother Arlie and abel Sothere's definitely that kind of danyamic where Harley's
like, you're not my mom,and then abel Able typically likes when Annie
helps him out. Let's see,Arley loves to play and kind of be
(05:28):
in charge. She has that typicaloldest kiddy playing a lot of the games
up usually play along for fairly welland then as our joke start, he
loves to make everybody laugh all thetime. Awesome. He he does a
really good job playing with both bothgirls, and like typical brother fashions for
(05:54):
our family, he likes to tickon his sister, so he likes to
kind of rile them out when hecan't. Yeah, so being the youngest
doesn't stop him from learning to pushbuttons like know what buttons to push and
get the reaction. Yeah, that'sawesome. Typically very sweet and kind to
them, but he does like too. That's what brothers I think in general,
(06:16):
are for, right, I mean, that's kind of what we do
all right. So if you hadto describe each of your kids in just
three words, what would you sayabout each of them? So we said
that Abel is fun loving and energetic, and fun loving and energetic, and
(06:39):
he is spunky Andy Annie is sweetand cutting and full of all of the
emotions and boy, and she getsangry. She's really but she's just full.
She's so full of emotion. Andthen I really is carrying an artistic
(07:00):
like her own person. She's veryunique and so I would love to know
as a family, what does whatdoes fun look like? What do you
guys do for fun? Well,we love to be Miles grew up outdoors,
as did I, and so wealways enjoyed being outside with our family.
(07:24):
Live on the lake, a smalllakes so usually typically we're always outside
of the lake. In the summer, we're at the beach like every single
day, so the kids love tobe outside of the beach in the water
the wintertime fudding and snowing or likeanything stuff. I really loves dancing and
(07:46):
music and singing and crying and loveto play more games in the Usually just
pretty content if we're all this todoing something together. For the most part,
that's like tagets side and are justwrestling with dad at the beginning.
Usually that's what our fun looks like. Yeah, any any good reason to
(08:07):
get out of the house. Tellus a little bit about when I'm assuming,
since Arlie is older, you probablyshe started presenting some things of concern
first, So let's start there andkind of what what happened or what did
you notice that was of concern thatkind of starred you guys down this journey.
(08:31):
So she was probably about two anda half when we first started really
noticing some like physical challenge, solike she was tripping very often, she
was struggling to run and jump andtime up the stairs like she did one
of the big things was we werejust walking back to the boat and she
kind of just like sat on theground and just didn't want to walk anymore.
(08:54):
She was just so tired. Atthat time, we thought, you
know, she was being too inhalf, but looking back, I could
definitely tell that, like she wasjust like fatigued. We'd been playing out
onside all day and she was justreally really tired. And then we got
her into some physical therapy and thenshe kind of gain a little bit of
(09:15):
shrink back and then lose it,you know, a little shrink back and
lose it. So right on tuningcaps we kind of noticed things starting and
then as she got older and withphysical therapy we thought they would kind of
improve, but they either like remainedthe same or some of her like gross
mumps skills got weaker or like morechallenging for her to do. And so
(09:39):
how did you what was the nextstep in trying to figure out if this
is just something you know that needssome extra pte versus there's something going on
under the surface. Sure, sowe did PET for a few years,
and my sister is a pediatric physicaltherapist, so tough to do and maybe
(10:03):
kind of something to look out forto see if like they weren't getting better.
She looks far enough a way thatshe can help directly, but more
like consultative. So after physical therapypropped her like two years on and off
for two years, noticing things arejust getting better and she was just small
(10:26):
for her size, and we kindof pediatrician then who reached out to do
neurology and just to see if there'sanything that you look forward genetically to see
if like what was causing the weakness, and then neurology we went there and
(10:46):
then they ran a ton of genetictests. The course of propatis constant.
So I did some X rays andan electric basically essentially like a shock test
to test to see if her nervesand her legs for responding to stimulation.
(11:07):
She didn't like, thankful for her, but we did a couple of those
tests and MRI and kind of everythingback after like a year of looking for
a reason, it was it couldn'tlike they're diagnosis, but they couldn't find
anything. We have to wait ofscience caught up. So geno man excellent
(11:33):
and there no no results nothing correct. Yeah, So when they when they
suggested that we wait for a coupleof years, Miles and I decided that
that really said sit well with us, and so we went to Cincinnati.
They're renowned for finding genetic imperfections orgenetic diseases. So we went there and
(11:58):
he kind of said, well,our neurologist said, he said, I
think it could be this one thingwould be rare, he said, Or
it could be that we just don'tknow what that. It could be this
fredrics a tatoo, which is reallyrare, or it could be something we
don't know yet. So if thiscomes back negative, also due to like
the National Institute of Health, andthey can run some testic kind of look
(12:20):
at and so then they ran thegenetic test that came back positive for fordis
ataxia. So that's where we stayedto State at So I just want to
jump back to your total time interms of trying to figure out a diagnosis.
That sounded like, was that threeyears plus that you guys were kind
of watching and looking to see whatwas going on? Yeah, I think
(12:46):
the first two years were definitely we'remore kind of just assuming that physically she
was just going to be a slowerprogressing child, and we weren't necessarily too
concerned when she was younger. Onceshe kind of hit like three and a
half four, that's when we reallystarted just becoming more wary of like,
(13:07):
we don't think this is just likeshe's having a hard time physically. Kind
I tell that you would like,So starting at four is when we really
started looking for a diagnosis. Andthen she was diagnosed in January January of
(13:31):
twenty twenty two. Is that you'rethe best six So about two years for
like a movie earth, Yeah,let's uh so going to the diagnosis,
can you tell us what that isand just in a few like in Layman's
(13:52):
terms, what that is doing tothe body, because I'm assuming you,
like most parents, at this point, you've become an expert on them on
in medical you're a medical expert,whether you sign up to be one or
not, because you've done all theresearch and you're doing all the appointments and
stuff. And so for someone who'slistening who's never heard of that diagnosis before,
tell us just what that is andkind of in Layman's terms, what's
(14:15):
going on in the body. Sure, So I still don't feel quite like
a medical expert in it, butthere's just so many facets to this disease.
So the general idea is putrix oftaxia is a neuro muscular condition that
affects for taxin in the kids bodies, so their bodies are not making enough
(14:43):
for taxon. And then it's ata cellular level, so and the mitochondria
needs for taxing all of the cellsyour body needs for taxon. So for
bodies not making enough of this andthe cells essentially oxidating and and buying so
(15:05):
or the mitochondria, because it's notgetting enough, isn't producing the right type
of like proteins needed in the bodyfor specific types of cells. So what
it kind of looks like for ourkids is that there's muscle weakness, and
there's so her muscle our muscles specificallyare weaker in her legs and her able
(15:35):
I'm assuming we'll get that away,but he's currently unaffected to see what else
all of those things out. Andthen the neuro part of it is that
freedish taxia causes a taxiad balancing issues, so walking and just body do what
(15:56):
you're wanting it to do. Getthere's the loss of signal between your brain
and what your prostiles are are gotcha, okay, and so that you you
just mentioned there that that able alsotested positive and so this is because this
(16:17):
is a genetic thing. Uh youguys, I'm assuming god everyone tested,
uh to see kind of where didthis come from? When is there anything
else that you know to be awareof? And so uh, just to
clear kind of fill that part ofthe story in Oh yeah, so when
we Myles also was saying that whenwe found out that it's what for you
(16:41):
taxia is he said that you wantedto mention that it's a progressive scene.
So when we first found out aboutit, it's progressively and like shortening.
So out of treatment there's nothing orstopped the disease from happening, the life
(17:03):
pres affected. And then with thegenetics, Yeah, with genetics we've got
any ury and tested to found outthat Hourly tested positive. I think I
believe the next step was to getMiles eye tested as well as the kids
too. There is a rare chancethat we could have both had freaking cap
(17:29):
as well. There are some caseswhere people present extremely later in life,
like in their thirty So we gottested both Miles and our carriers, so
or for the kids too, havetaxi they both had to have the recessive
being from miles and I. Essentiallythat looks like they had a twenty five
(17:52):
percent chance of not being a carrieror having freaking taxi a fifty percent chance
of being a carrier, are twentyfive percent chance of having drift caaxia.
So we've got that orely Any isat a carrier or does she have redricts
to taxio so she does not haveany chance of her kids one day if
(18:17):
she having that progressive word is atough one to swallow, especially after you've
been on a couple of year journeyof figuring out what's going on. And
so I'm curious, how did youguys navigate that? It's a I'm sure
one that's you're still navigating, Iwould assume, But you know, what
do you uh kind of where doyou look to to process that? Well,
(18:45):
mean pretty heavily on mild and ourfaith, I mean the progressive Yeah,
it's hard. I feel like weare kind of something kind of in
the state of watching for like what'sgoing to happen. That's like, what's
(19:06):
the next thing that's happened? Likethat a sense of calm or a sense
of like peace about it because weknow that it's it's not going to stay
this way forever. Like, soif we're in a good spot right now,
we kind of just have to reallyfocus on just enjoying what we have
today and having faith that God willprovide us for whatever we need that comes
(19:33):
to the future that we're going totake kind of today as it comes.
I do I heavily arm Ailes andsome of our close family friends and our
family to get us through those timeswhere like something new is happening, or
you know, results from like bloodwork or scans or things like that are
(19:53):
coming back showing progression. That's alwayskind of tricky. Those doctor's appointments that
we have each kind of give mea lot of anxiety, and Miles really
helps me kind of calm down.Yeah, Ultimately, it's just relying on
faith and faith and like Beco issaying, you know, kind of close
(20:15):
family friends. Yeah, And Iwant to I'm going to come back to
that piece of it, especially thefamily friends and the relationships here in just
a minute, because one of thethings that we hear so often from families
is how important community is. AndI'm we've found that that's true in the
diagnosis space when you are able toconnect with a group of people that,
(20:38):
especially when what you're going through isextremely rare to find other people. A
lot of times people talk about Facebookgroups where that they connect with not only
information and get knowledge from those groups, but also true relationship because they're navigating
something very similar that very few peoplecan actually relate to. But then also
(20:59):
that just personal connection of family andfriends. We're gonna come back to that
in just a second, because Ithink that's a big piece of their story
that I want to hear about.But I do want to know. So
going back to Abel also testing positive, how has that presented any uh,
anything presented for him yet? Andhow do you how do you go about
(21:22):
now that you know in advance?Is there anything in place to help I
know you said there's no cure orspecific treatments, but are there Is there
anything that's come out yet that's beenable to at least slow progression or delay
any sort of onsets that now thatyou know that with early detection for him
might be helpful. Yeah, Ohso I do want to backtrack there.
(21:45):
There is FDA did approve a nota cure, but it's a treatment kind
of slow the progression. However,it's only approved for sixteen and up,
so kids Crown the editors sixteen yearold. Currently. Right now we're in
a clinical trial and the idea ofthe clinical trial is too oh yeah,
(22:10):
there's some of the youngest kiddos init. Able is actually I think one
of the youngest ones who's in thisclinical trial. But this so this clinical
trial that we're in, the pointof the clinical trial is to slow the
progression. They found some data onit that it delays are right, it
(22:32):
increases like their longevity of walking byit said, So it's kind of hard
hell for exactly how Yeah, butthey said clinical trial drugs that they're on
currently hash people who are walking amulatory. That's currently what the kiddos are on.
(22:56):
They're trying to see if there's anythere's no benefits for younger kid is
that I'm But as far as progression, I know some people do diets and
things like that. One of thebig things that the doctors and other parents
have said is just keep them activefor as long as they can and just
(23:17):
and kind of increase their steam andand increase their muscle mass before the disease
kind of really takes full because onceit does them, the fatigue picks in
and it's really hard kind of freakingmuscle or be not tired enough to take
to continue to exercise. Sorry,could you hear me? Yeah? Sorry,
(23:38):
I was losing a little bit.So I turned your video off just
to see if that would help alittle bit. So I think what I
want to make sure that I gotwhat you were saying. There the gist
of it. So there's the FDA. There's recently been some approved medication that
is at least going to help withsome of the onset. Is that what
(23:59):
you said? So the FDA drugthat has been approved helps slow down the
the quick progression of the disease.So what they said was they do it
by a standard of like a specificthey call it the ampphires, which is
a up rating scale. So theyfound that this drug is able to keep
(24:26):
the disease kind of at bay oran extended period of time. And I
exacinitely sure at this point in time, because it's it's kind of new and
especially pediatrics, how long they cankind of hold the disease at bay.
But it definitely slows the progression ondrug, it will do progress, but
they found through natural district studies,they're not progressing as quickly. Gotcha okay,
(24:51):
So so good news in the front, like there's there's progress happening in
the research. Yes, there's lotsof research, even in like the ver
beginning phases of resource animals and thingslike that. There's a lot of stuff
that's coming out. They just knowthat it takes file to get to human
phase and then even longer to getto the kids. So this drug has
(25:15):
been approved for just over a yearand they still have it up with patric
trial, so adults have been ableto take this drug for about a year.
We're just kind of waiting. We'rewaiting for the FDA to kind of
allow the pediatric trials to start onthis specific drug and hopefully some other drugs
(25:36):
coming up to gotcha okay. Andyou said that that both arely and able
are currently in a clinical trial,right, and how long are they How
long does that go for the clinicaltrial? When we started it was seventy
two weeks. We are been awhole year, so we've been in it
(26:03):
for a year, and then onceour seventy two weeks is up, depending
on what's coming, if there's anymore clinical trials. Now we have the
option to continue that clinical drug andI think they call it an extension study,
and so it's not as intensive ofbusiness or things like that, but
(26:26):
you still have to go in andget them checked out, and that's the
only place we get the this thatthey're on, the drug that they're on.
One of the aspects of kids dealingwith rare medical journeys that I think
tends to not be discussed as muchis some of the unseen tolls that it
has on them, like the mentaland emotional impacts. And I'm just you've
(26:48):
mentioned in a previous call that that'ssomething that especially Arlei has had to face
some and so I wondered if youwould just kind of share a little bit
about how that's impacted your family andand how you're navigating that. One of
the hardest hearts about the disease isusually the like unseen things, especially for
(27:10):
Aurie, who is old enough tounderstand that Friedrich's a Taxia makes her look
different or look different physically, andthen she just for us, you know,
we can talk to her about likewhy it happens and the physical things
(27:32):
of that, but it's really hardwhen you know, she asked these questions
about like why it happens to herand things like that, where we don't
have the answers or big questions likewell, when is it going to be
fixed and things like that. Soour biggest thing that we rely on is
is just it's God's plan for her, and God always has a good plan,
(27:57):
even though sometimes there's stuff like hardseasons, and we just have to
trust that. We also tell herthat she's beautiful and has all these other
she has all these other qualities abouther that are absolutely wonderful and not affected
by Friedrich's ataxia, and so wereally try to play on her strengths as
(28:19):
far as able. He's still tooyoung to understand any of that yet,
so we feel like we'll have abetter idea of how to handle that as
he gets older, just because we'vebeen through it once. I think a
lot of people on the outside focuson medical treatments and how we can heal
(28:44):
or get our child better. Theydon't often realize that our early knows that
something's wrong with her and that sheis falling behind her peers as well as
her sister Annie physically. It's veryhard as a parent to see her child
fall and cry on a daily basis, just to be or be just downright
mad disease that has no cure.We as parents continually tell her how love,
(29:11):
beautiful and unique she is and thatshe has made perfect in God's image.
In an earlier conversation, you'd mentionedBecca, how impactful the relationships in
your lives have been in being asupport network for your family. So just
briefly touch on who those people areand what they've mean to you and how
they've helped you navigate this rare medicaljourney that you're that are really enabler on
(29:36):
For me, I think if Ididn't have the support system that we did,
this whole journey would have been muchharder. I've been able to lean
on my family and my friends andour close friends from church to help mostly
(30:03):
just grief with and talk things over. I've been able to talk with my
family just about like what this lookslike in our future, and just sharing
some of our concerns and fears.We've also talked about like what family vacations
are going to look like, ormaybe things that we need for our home
(30:26):
period. We've also been able totalk about people in our church about just
how we deal with this as afamily, making sure that we're supporting our
kids in the right way and toschool or find God through all of it.
(30:51):
They've been a wonderful resource for usas well, and my friends have
just really been there to support meand help me. If I'm trying to
find certain information on topic. Beinga rare disease, it's really hard to
find a lot of good reliable research, and so it's been great to have
(31:18):
friends who've in family who've helped dothat. Also, just like whenever I'm
kind of feeling down or sad oranything about that, usually my sister,
my mom, and my mother inlaw are usually always there to help make
(31:40):
grief through that and also to kindof lift me back up. Obviously,
my ales is who I talk tothe most about the whole thing, and
he's just been so strong and supportivefor me, you know, being able
to for us to sit in thesadness kind of, but he also was
(32:04):
able to pull us forward and justhelp us live each day with as much
joy as we can. It wouldbe a very dark small world without our
family, friends in church railing aroundus and being such an incredible support system.
I'm hesitant to name people for fearof leaving somebody out, but just
(32:27):
to name a few that really cometo mind. My sister Katie, My
sister in law is Rachel and Amanda. My brother in law is Derek,
Bill and Patrick. My parents Davidand Christie. My father in law Bruce
who passed away a few years ago, and his wife Tish, my grandmother's
just really all of our extended family. Also my pastor Jeff and our church
(32:52):
at church family at Emmanuel Bible Church, just as well as countless others.
These people have all touched their livesand really unique ways, and we're incredibly
humble and just forever grateful for allof them. Another huge support for me
has been the Friedrichs a Taxia Facebookpatient pages for families in Michigan, as
(33:19):
well as the Friedrichs Taxia Parent groupthat has a huge amount of parents with
children who have free drinks Ataxia fromall around the world. I'm able to
post questions there, and it's aforum where other parents can give answers,
(33:40):
and or I can help other parentsgive answers, get answers, or we
can share resources. Period. That'sbeen really helpful for maybe different questions that
arise, So it's just like,hey, this happened to our kids?
Is this something that we typically seein FA? Has anybody else I very
experienced this? It also just helpsus feel not so alone in the whole
(34:07):
disease journey, the Fujik's text YourJourney. Just knowing that there are other
parents out there who are going throughthe same thing and maybe have already gone
through parts of this is really comfortingto know that that we're not alone.
(34:28):
I have a couple of parents whohave young kids, so who are really
walking kind of in the same shoesthat we're walking in, and we have
their phone numbers and were able tokind of text back and forth just talking
about different things like what's the bestwheelchair to get, or the best types
(34:51):
of shoes that embraced as well,or has anybody ever heard of this kind
of complication? Or what about thesetest results? And just there's not that
much data online and so when weget some of these things, our answers
can be really hard to find.But it's been really nice to have other
(35:15):
parents who are going through the exactsame thing. So that's been a huge
support to me as well. AllRight, so I have just a couple
more questions for you, guys,and this is one that if you're okay
with it, I'd love for youboth to answer. What have ourly and
able taught you about life? Ourreally enable have both taught me that life
(35:38):
can change in an instant and justreally to take each day as it comes
and enjoy it. They've taught meto be uh, just be resilient and
just stay positive no matter what.Well, I think that kind of all
kids, all of our kids helpwith this. I mean, they're just
(36:01):
it's so fun to kind of watchthe world and kind of experience all of
the wonderful things that we have andthat we get to do together through their
lens, like, for example,something as simple as just running through big
mud puddles in our yard and justhaving them laugh and just be silly and
(36:28):
totally content in the moment. It'samazing to watch and kind of we've definitely
learned to be content and enjoy everymoment that we have. When you get
(36:53):
a progressive diagnosis, it really justmakes you slow down and really not take
anything for granted. So you know, sometimes we're tired and exhausted at the
(37:14):
end of the night and Aurley justwants to snuggle up and chit chat for
a while before she goes to bed. And you know, we still have
lots of other things in our todo list, but after you know the
diagnosis, we really have tried toslow down and just takes more time to
(37:36):
be together and not focus so muchon the to do list as much as
just being together and Able has justbrought so much joy and humor and silliness
(37:59):
into our life. So just beingmore silly, I think is about able
has taught me because you can neverhave too much joy or laughter. And
the last one for you, guys, and again, if you're open to
it, I'd love for you bothto answer what makes you most proud to
be their mom and dad. I'mjust really equally proud of all my kids.
(38:22):
They're all distinctly and beautiful, unique. It's been one of my greatest
joys in life to be their dad. This fa Friedrich to Taxia will always
be part of our family's lives,but I just really refuse to let it
define who we are as a family. I am so proud to be their
mom and dad. Women, theymake me proud every day. I'm not
(38:45):
sure if I can really pinpoint whatmakes me the most proud. I think
I'm the most proud of my kidswhen they're just sharing God's love and being
(39:09):
kind and joyful and compassionate, whenthey're helping other people, when they're showing
grit and tenacity where they don't giveup on something, I think that's when
(39:29):
I feel the most proud. Iwant to thank you guys so much.
I know that taking a little bitof time, especially on your on your
vacation as a family, to carveout this conversation is tough and a little
bit of extra added stress, SoI thank you so much for your willingness
to do that and join us here. We're right around the corner from April,
(39:52):
and I'm super excited to be ableto introduce your awesome family to the
goshout Love community and I know thatit's going to be a great month of
shouting loud for your family, andI hope you'll feel the love from people
across the country as they are,you know, making a difference and helping
you guys, and just learning abouta new diagnosis and new kids and how
(40:15):
great they are. And so thankyou so much for joining me and sharing
your family with us. We appreciateit. We just want to say thanks
for taking the time out of yourday to listen to this podcast and just
having the interest in our family andour journey through this. We appreciate all
(40:38):
of your support financially and just relationshipand our relationships and spiritually. Thank you
for all of the prayers and relishesthat we've gotten so far as well.
At go shout Love, we doamazing things for amazing families with kids on
(41:00):
medical journeys. Each month, weShout Love for families through the sale of
creative apparel inspired by the kids.This month's Together is the Best Adventure design
is inspired by Arley and Abel,amazing siblings at different stages may shared rare
medical journey. Every purchase in Aprilwill go to help Arley and Able's family
(41:23):
save up for a more reliable vehicleto make their drives for appointments clinical trials
safer or comfortable, and eventually beable to convert to a wheelchair accessible when
needed. Visit our website go shoutdot Love to support Arlei and Able through
the purchase of a T shirt,pet hoodie, or other items.
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