Little boy battling rare disease to receive life-saving bone marrow transplant
MINNEAPOLIS -- A little boy from Illinois with ties to Minnesota is about to receive a potentially life-saving gift.
"Ari is really silly. The first person he would kiss was himself. So, he would find a mirror and kiss himself in the mirror and he wouldn't give us kisses yet," said Stephanie Chambers-Baltz, Ari's mother.
Ari Chambers-Baltz is obsessed with buses. But he's never been able to ride one.
The 2-year-old loves to explore but his opportunities are limited because he's battling a rare disease called Hyper IgM syndrome.
"You think of the 'bubble boy' who was really at high risk of infection. It's quite similar, except with hyper IgM they have the cells, they just don't work appropriately," said Dr. Christen Ebens, a pediatric hematologist at M Health Fairview.
"He started getting sick when he was 4 months old, and that led to a three-week hospitalization in St. Louis. But we left without his actual diagnosis," Stephanie said.
Ari got better after going on oxygen and isolating at home. His family thought they were in the clear.
"We sent him back to daycare and he started getting sick again and again," Stephanie said.
After another hospitalization last year and genetic testing, Ari was diagnosed with hyper IgM. There's only one way to cure it -- a bone marrow transplant.
With no matches from relatives, Ari's family tried "Be the Match," the national registry with 39 million donors.
Not one was a match for Ari. The family continued an isolated life, with Ari's mom comparing it to the first two weeks of COVID-19.
"Most people were like scared and like isolating, staying in their home and masking, and it feels like we've stayed in that place," she said.
For months, the family worked to hold donor sign-up events. Recently, a match was finally found.
"It's a 25-year-old female from the United States," she said.
Ari will start starts 10 days of chemotherapy at Masonic Children's Hospital this week. That will flush out his current immune system, making way for the new stem cells, which will build a new system thanks to his transplant on June 20.
Ari's long locks are gone ahead of chemo. Dad shaved his hair, too.
A long road of recovery follows the transplant, with four to six weeks post-op in the hospital, and a minimum of 100 days of outpatient care after that.
In six months to a year, Ari could be living a happy, healthy life.
"We want to travel; we want to see family. I'm a Minnesotan and so you think about summer, you think about like going swimming in the lake. And I want him to be able to do that and like go swimming with his cousins and go to the cabin and things like that," she said.
Stephanie is hopeful that Ari will get to enjoy a life that's been on pause.
"Our family is here, this is a really great team, and we just are like really praying that this is what cures him," she said.
