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UI Stead Family Children’s Hospital 2019 Kid Captain: Jeg Weets

– I want him to get the chances
that everybody else does. And grow big and strong. And I have faith that he will. (soft music) He was having perianal
skin tags on his bottom and our pediatrician just told us to follow up with a gastro doctor. That led us here. – And he’d had a couple of tests done but they decided he needed a colonoscopy and some other things
and ultimately decided after deliberation that
he had Crohn’s disease. – [Jenna] Crohn’s disease
is the chronic disease with inflammation of his
gastrointestinal tract. – [Brad] It affects his daily
life by just like at school, he can have accidents still sometimes. You know, he has to skip
out on a lot of things to run to the bathroom. That was kinda hard but it turned out to be a blessing in disguise. – During an exam she noticed
that his spleen was enlarged and sent us for an ultrasound. We had a follow-up ultrasound
and then blood work and with no answers, then we
met with the genetic team. When they were screening
for these different diseases we were kinda caught
off guard with the fact that he really did have
something quite serious and he was diagnosed
with Niemann-Pick type C. Niemann-Pick type C is a
fatal genetic storage disorder and the cholesterol in his cells, they can’t get rid of that correctly so it builds up in his cells
and then kills his cells. – It’s a very hard disease to swallow because it takes everything from him. – He’ll lose his functions,
speech, swallowing, he’ll have enlarged
spleen and enlarged liver. He’ll lose the ability to walk, cognitive functions will
diminish along with his hearing, before ultimately he’s, it kills him. – [Brad] Did you get the wheel real good? It’s actually very, very hard to diagnose and a lot of times kids lose
a lot of their abilities and stuff before they diagnose it. Were it not for this hospital
running that DNA test, we would still have no idea and he wouldn’t be
getting treatment for it and we’d still have a big
surprise coming our way. – [Jenna] So right now
he gets a IV infusion here at the hospital every four weeks. That has been helping tremendously. – Right now he’s in a study,
it’s a drug called VTS-270, and it’s not approved yet for FDA but it’s through compassionate use because it’s a fatal
disease, they allow ’em. And they’re working on
getting it FDA approved. There’s been a lot of
good signs that it works, especially before a lot of damage is done to the brain cells. We went to Washington D.C.
to fight to get it approved to go to a couple meetings with the FDA. It’s the only thing there is. Ten years ago or less you were just told, “Enjoy your time,” and you had
to watch your kid deteriorate but at least now there’s some hope. – It’s a rare group. There’s only 500 cases worldwide so for them to hear us was a big deal. This hospital has given
my son the best care. They have given him a great shot at a life-changing treatment
and if we didn’t know that he had this disease,
it would’ve been too late and maybe we wouldn’t have
been able to stall it. – [Brad] I think what
the doctor’s goals are, as they’ve mentioned to us before, is like diabetes, they can’t cure it but you can live with
it and you can treat it. To just see him and see how
happy and how good he is at the things he does and
to see it stripped away, I can’t even imagine it so
I just have to stay positive that he will be the kid
that proves it’s survivable. (bike engine revving) – And right now we’re
really lucky that he’s able to do almost everything
that normal children can do. He’s doing really well. If you didn’t know any better, you wouldn’t think he was sick. – And he’s taught me happiness and lucky, very lucky to be his dad. If I could lay out the
future like I wanted to I would want him to
just have a great life. I would give mine in a second to know that he could have that. (soothing music)

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