MACOMB, MI – The effort to help find a matching bone marrow donor continues for baby Elias Argirokastritis who is suffering from an extremely rare disease and needs a new immune system in order to survive.
Elias, a 9 month old of Greek descent, is in need of a bone marrow transplant. Elias suffers from a rare immunodeficiency disease called NEMO, nuclear factor-kappa B essential modulator deficiency syndrome. This complex disease affects the skin and immune system and makes patients susceptible to severe and life-threatening bacterial infections. This makes even the most minor of illnesses life threatening for Elias. NEMO affects only boys and is so rare that Elias’ diagnosis in October made him just the 22nd registered NEMO case in the U.S.
Initially, doctors did not think he would make it to 7 months but Elias continues to fight! Though Elias currently has no matches, his mother Evelyn and father Antonios still hold onto hope that their young son will get a second chance at a healthy life.
An online Virtual Donor Drive has been set up to register potential bone marrow donors in order to the cure for Elias or others in similar situations. A simple cheek swab is the first step in determining a match.
More information is available online at: https://getinvolved.dkms.org/
According to the University of Michigan Health page, “Fevers, lethargy and severe feeding troubles that caused weight loss followed, with Elias in and out of a hospital near the family’s home in Macomb, MI. But the mysterious symptoms kept getting worse.”
Elias’ mother Evelyn said, “The doctors were at a loss. We knew something was really wrong and that we had to get him to the right place,” Michigan Health reported, adding that “at 3 months old, Elias was transferred to University of Michigan C.S. Mott Children’s Hospital, where he had several tests.”
Among the health issues the tests revealed was that “fungus was growing in his lungs. His white blood cell count was abnormally high. And the baby boy was fighting three viruses and three bacterial infections,” Michigan Health reported.
“The doctor told us that these symptoms basically tell us his immune system isn’t working,” Evelyn said, Michigan Health reported, “He is one of the youngest diagnosed patients, so maybe whatever is learned from him can add to research and help save other lives.”
The chances of finding a match increase if a potential donor is of similar ethnic heritage, so Baby Elias’ parents have taken the bone marrow drive to Greece as well as the Greek-American community.
Those interested in joining the DKMS registry can find more information online at: https://www.dkms.org/en/register.