Grandmother on mission to find bone marrow match for grandson with rare disorder
A Minnesota grandmother is traveling hundreds of miles across two states in the hopes of finding a bone marrow donor for her grandson.
Ari Chambers-Baltz, 22 months old, is diagnosed with hyper IgM, a rare immune disorder.
“One out of a million boys get this. All will pass away by the age of 30 if they don’t get a transplant,” said Sharon Chambers, Ari’s grandmother.
Chambers said so far, there is no perfect match for Ari through Be the Match, the national marrow registry.
“Thirty-nine million people, and there’s no match for Ari yet,” Chambers said. “But it just takes one. I’m looking for that one person out there.”
The family is now hosting sign-up drives at malls, churches and colleges across Minnesota and Wisconsin.
5 EYEWITNESS NEWS was there as dozens of college students stepped up to swab their cheeks Friday at Bethel University, which is Ari’s parents’ alma mater.
“It’s just an easy thing that means nothing to me but can mean a lot to somebody else,” said Aiden St. George, who signed up for the registry during Friday’s drive.
Ari and his parents currently live in Illinois, although much of their family is in Minnesota.
If Ari finds a match, his stem cell transplant will take place at M Health Fairview Masonic Children’s Hospital in Minneapolis.
His doctor told 5 EYEWITNESS NEWS a transplant would represent a cure for Ari, and he would likely go on to lead a full, healthy life.
Masonic Children’s Hospital has already done five stem cell transplants for kids with hyper IgM and all have been successful.
“If there is a match, 90% of the time, we would collect stem cells through your blood, similar to donating plasma. It takes about four to six hours to donate. In 10% of cases, we take the marrow out of your hip bone, which is a surgical procedure,” said Keesha Mason, account manager for Be the Match.
Mason said 500 people have stepped up to join the registry after hearing Ari’s story.
“All those people that have registered for Ari, the masses of people, they might not be a match for Ari, but they could be a match for someone along the road,” Mason said. “There’s something about believing in miracles and being a part of something bigger than you know.”
Ari’s family hopes his match is out there.
“We know we need help, and we’re not afraid to ask because it is a life-and-death situation,” Chambers said. “We’re choosing to hope. And we need Minnesota and Wisconsin to help us the rest of the way.”
If you would like to join the Be the Match Registry on behalf of Ari, text “AriMN” to 61474.
There are in-person sign-up drives happening on these days as well:
- Wednesday, March 29, 9 a.m. to 5 p.m. at Bethel University.
- Saturday, April 1, 11 a.m. to 5 p.m. at the University of Minnesota Recreation and Wellness Center