KIDS WITH COURAGE: Ari Chambers-Baltz

Updated: Apr. 26, 2023 at 10:00 PM CDT
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ROCHESTER, Minn. (KTTC) – KTTC is honored to introduce viewers monthly to some of the youngest among us, facing the unthinkable with bravery and optimism. In our 32nd “Kids With Courage” segment, Caitlin Alexander introduces us to 22-month-old Ari Chambers-Baltz.

We met him via Zoom, as he lives in Carbondale, Illinois.

“Bus! It’s a bus!” he shouted, as he played with his toy bus.

Back in Rochester, Ari’s grandmother, Sharon Chambers explained.

“He loves buses. He loves buses. Every morning, we wait for the school bus to go by,” she said.

Ari waiting for the bus
Ari waiting for the bus(Sharon Chambers)

Sharon and her husband, Craig, get to spend a lot of time with their bus-loving guy, taking turns making the trip from Rochester to Carbondale where he lives with his parents.

“He’s a great little grandkid,” Craig said.

Ari can’t be in daycare. For him to go could be a matter of life and death.

“We want him around for a lifetime, and we can’t do this alone,” Craig said.

Before anyone knew differently, Ari went to daycare at about 4.5 months old, and he got sick.

“If you or I got this virus, we would have some nasal symptoms,” Craig explained. “And we would clear it within half a week, week-and-a-half. He became lethargic. He didn’t respond. His oxygen levels were too low.”

A medical team took Ari by helicopter to a children’s hospital in St. Louis.

After a few weeks, doctors sent him home on oxygen.

Later attempts to return to daycare led to more serious illnesses and hospitalizations.

“It’s been a series of worst case scenarios over and over again,” said Ari’s mother, Stephanie Chambers-Baltz. “They started doing all this exploration, and they found out he had a very rare genetic disorder, Hyper IgM syndrome.”

It means Ari doesn’t have an immune system to fight viruses.

“One in a million boys,” Sharon said. “So, that was a tough pill to swallow. It’s like, why Ari?”

Time spent watching for buses also became time spent waiting on a life-saving gift: a stem cell or bone marrow transplant.

Ari needs one before he experiences organ damage and from a young donor. He or she should ideally be around 20 years old.

Sharon and Craig soon felt babysitting wasn’t enough.

“We’ve gone to Apache Mall, we’ve gone to Autumn Ridge Church, we’ve gone to the University of Minnesota-Rochester,” Sharon explained.

Be the Match event at Apache Mall
Be the Match event at Apache Mall(Sharon Chambers)

They began hosting “Be the Match” drives across Minnesota, Wisconsin, and elsewhere, with the help of others.

At the drives, they swab people’s cheeks to run them through the national registry and search for a match.

“Ari needs a transplant. That’s our motivation. We want to save his life, and along the way, we can help save the life of other people,” Sharon said.

And while Ari has endured hospitalizations, illnesses, surgeries, and needle pokes, his parents said he has kept his spirit.

“He is silly and smiling, and most of the time, he gets to just be a normal kid,” Stephanie said.

This month’s Kid with Courage is really multiple generations of courage.

“His health journey is also a story about our family, and to me, family are the people who show up for you no matter what, and that’s something my mom and dad have done,” Stephanie said.

Ari is currently scheduled to have a transplant performed in the Twin Cities in late May, though as of this report, he does not have a match.

To see if you are a match for Ari, you can visit this website to get started.

You may also text ARI MN to 61474 .