22q Deletion Syndrome: Camdon’s Story

22q Deletion Syndrome: Camdon’s Story

Camdon is born on March 2, 2012, Tim thought
we were having a healthy baby boy. A few hours after he was born we found out he had a heart
defect so he was sent over to Nationwide Children’s hospital.
Camdon’s heart defect, tetrology euphulo with pulmonary atresia was an indication of possible
22q deletion syndrome. He came back positive for that.
22q deletion syndrome is a micro deletion on the 22nd chromosome, it occurs in one out
of every 4,000 birth and has the potential to impact every system in the body often leading
to a wide range of health issues. At Nationwide Children’s we dealt one of the
most comprehensive centers with the diagnosis and management of problems associated with
22q deletion syndrome. Were lucky to have people that specializing
it in here. He’s got severe acid reflux, or they can have learning disabilities, or speech
delays. He’s got a fluffy airway so that’s why he’s got the trache.
Camdon sees a team of more than 13 specialists at Nationwide Children’s.
He’s been in the hospital probably seven or eight months total on and off. A lot of those
times intubated or having a BiPAP mask on his face.
He has been followed basically since birth to make sure that he can get all the intensive
services he needs to progress and achieve his best outcome.
He is the best kid in the world, he’s the strongest kid I know, he’s happier than any
kid I’ve ever seen. Some of my favorite memories are at the hospital
and he spent some holidays there so my favorite pictures of him are there.
A Halloween night and he had a stay at the hospital, and he was just does a doggy, he’s
a good little brother. He loves to dance, he loves music.
He likes kids’ pop, yeah. You’ll see Camdon’s love for music and dance
on mile 22 of this year’s marathon where he’ll be featured as a patient champion.
We chose Camdon’s 22q dance crew because I wanted it to be a way to raise awareness for
22q deletion syndrome just because it’s not heard of. To give back to a hospital that
has done so much for us, it’s a really good feeling. Nationwide Children’s means the world
to us, they’ve saved his life countless time and have done their best to make our stays
there the best that they can under the circumstances though we really cannot thank them enough
and feel like we owe them everything.

7 comments / Add your comment below

  1. I have tratalgoly of fallot, pulmonary stenosis, and VSD. I was born with it. I am 13 now. My hostipal saved me.

  2. I just saw this and wow thank goodness he's doing alright, my Reese is 10 with R22 and found it soothing to see that your son has a big older sis like mine does, my daughter is 15 and helps alot so hopefully your daughter does the same

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