Finding a Bone Marrow Match for a Local Infant With a Rare Disease

A Macomb Township infant is in need of a bone marrow donation to save his life. Now, his parents are encouraging people ages 18-44 to register for the Be the Match donor registry.

An 8-month-old from Macomb Township has a very rare disease – and his family is on a quest to get their little boy a new immune system.

Just five hours after he was born, Elias Argirokastritis broke out in a rash. His parents, Evelyn and Antonio, were told he was likely allergic to his hospital linens. But things got worse, with head-to-toe rashes, fevers and trouble with feedings. Finally, he was admitted to the U-M C.S. Mott Children’s Hospital in Ann Arbor. Doctors found a fungus on Elias’ lungs, an abnormally high white blood cell count and six viruses and bacterial infections. By 6 months, the diagnosis was official: NEMO – or nuclear factor-kappa B essential modulator deficiency syndrome.

In simpler terms, Elias has no immune system.

“Technically he is a like a bubble boy,” Evelyn says. “He should not have survived outside the womb.”

But he did, and he’s in a fight for his life. Elias is susceptible to blood infections, so even a common cold could be lethal. The solution? A bone marrow transplant.

“I could give him an organ, but I can’t give him bone marrow,” she says. “I cannot give him this gift to let him live a healthy life.”

His parents have hosted local drives and are urging others ages 18-44 to sign up for the Be the Match bone marrow donor registry. To help, visit join.bethematch.org/babyelias.

Photo by Shelbie Rose Photography

LEAVE A REPLY

Please enter your comment!
Please enter your name here

- Advertisement -

LATEST STORIES

Local Mom Opens Walking Lightly. A Zero-Waste Shop in Ferndale.

Trade single-use plastics for zero waste options at the new Ferndale shop.

Metro Parent’s Top Posts of the Week

MetroParent.com is loaded with great info for parents. Here, we've listed the best of the best posted this week for you to thumb through at your convenience.

Macomb County Doctor Explains Why You Should Get the COVID-19 Vaccine

The vaccine is key to getting the COVID-19 pandemic under control. Here, a local doctor explains why and puts some misconceptions about the vaccine to rest.


- Advertisement -