Ari Chambers-Baltz: A story of survival
(ABC 6 News) – Inspired by the journey of Robin Roberts, we have a story of a little boy with local ties, who is fighting for his life.
Ari Chambers-Baltz is battling something called Hyper IgM Syndrome.
If he doesn’t get proper treatment, it’s fatal.
RareDiseases.Org says Hyper IgM Syndrome affects two in one million newborn boys.
It’s extremely rare.
“He’s inquisitive, he’s energetic, he likes to explore,” Craig Chambers, Ari’s grandpa said.
Ari is just like any other kid, he loves to live life.
But unlike other kids, Ari is fighting to survive.
“He was sick for over two months, he had severe double sided pneumonia that effected every part of his lung. He had to go on oxygen because of that for two and a half months,” Craig said.
It was that moment when Ari’s family knew, something was off.
“He was diagnosed with Hyper IGM Syndrome in July 2022. We’ve had to think, what if we lose Ari so many times. He’s only a year and a half,” Stephanie Chambers-Baltz, Ari’s mom said.
Hyper IGN Syndromes are a group of rare disorders in which the immune system does not function properly.
The key to survival is a bone marrow transplant or peripheral blood stem cell transplant.
Out of 39 million people listed in the “Be the Match” registry, there’s still no match for Ari.
“Ari is a delight, we would appreciate any help we could get so Ari can make it to become an adult and life a normal life,” Craig said.
Ari’s loved ones are taking the time to Spend time with him. They never know when it might be their last.
Craig travels Carbondale Illinois to take care of Ari whenever he can.
Stephanie, Ari’s mom, grew up in Rochester. Family support is not far.
“I have to remain hopeful, it’s an active choice. If I don’t it’s too much,” Stephanie said.
Hope is alive for this family.
If you’d like to help Ari, there’s a “Be the Match” drive in honor of Ari in Rochester at the Apache Mall on March 11.
If you’d like to become a donor, text KAAL to 61474. For information on how to “Be the Match” and save a life, CLICK HERE.