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Edgewater Church Works To Save Life Of 8-Month-Old Boy With Rare Disorder

Photo Of Elias, uofmhealth.org

Imagine welcoming a little boy into your life only to find out a few months later that he has a immune disorder so rare that only 22 others have been diagnosed with it in the US. The latest person to have the condition, 8-month-old Elias Argirokastritis, is fighting for his life and a local church is ready to help.

Evelyn and Antonio Argirokastritis, who live in Macomb, Michigan,  were excited when thier son Elias was born this past October. However, Elias started to turn bright red soon after he was born prompting doctors to diagnose it as an allergic reaction or eczema. But as time went on, the little boy started breaking out in horrible rashes that looked like bad sunburns.

Over time things got worse as Elias experienced high fevers, lethargy and feeding issues. At 3 months of age, Elias was brought to University of Michigan C.S. Mott Children’s Hospital to undergo testing. With fungus growing in his lungs and his white blood count extremely high, the doctors realized he was fighting off three viruses and three bacterial infections.

It was clear Elias’ immune system was not working properly. Then came the heart-breaking news, he had an incredibly rare disorder called nuclear factor-kappa B essential modulator deficiency syndrome (NEMO). So rare in fact, that he is only the 22nd registered case in the U.S. Immunodeficiency Network.

To keep him healthy and alive, Elias receives systematic IV immunoglobulin infusions at the hospital. His tiny body endures regular therapy as he receives purified plasma pooled from thousands of blood donors on a regular basis. But he will eventually need to find a perfect 8/8 donor match for a transplant. Currently there is no registered match in the world.

Elias’ parents, knowing that their son needs to find a donor to save his life, took to social media. Because the parents are Greek, they focused on Greek donors because those who share ethnic origins have increased probabilities for matches.  Other drives to find a match for Elias have already happened in their own state of Michigan, across the rest of the US and around the world including Greece.

After the urgent pleas from Elias’ family spread across the world, Vicki Dimitrakakos (a Chicago-area woman) heard about the story on Facebook and was immediately affected by the heart-wrenching situation.

“I heard about the story about a month and a half ago and I was drawn to it because the boy shares the same name as my own little son,” said Dimitrakakos. “My heart bled for this family and I began to think about ways to help. I am very involved in the Greek community, my church and the all the Greek events throughout Chicago. I wanted to see what I could do local, here in Chicago.”

So after reaching out to the boy’s mother, Dimitrakakos contacted her childhood priest, Father John Kalomas, who is currently in charge of St. Andrew’s Greek Orthodox Church at 5649 N. Sheridan Rd. in Edgewater. Having one of the largest congregations in the city, she knew that enlisting the church to help find Elias a donor was a terrific plan.

Father Kalomas was very receptive to help bring attention to Elias’ situation. So it was decided to do a marrow donor registry drive at the church April 1, on one of the church’s biggest Holidays – Palm Sunday. Expecting a large crowd that day, anyone 18-44-years-old in attendance will be able to give a sample of their DNA through a simple swab wipe in their mouth.

After the DNA is collected it goes into a world-wide registry where people have the possibility of not only saving Elias’ life, but many others as well. If a match is found, most transplants do not require surgery as it is often collected through blood or stem cells.

Dimitrakakos is dedicated to getting people to the registry drive. Since hearing about the  Argirokastritis’ efforts to find a donor, she has felt personally connected to their family.

“What if this happened to me or one of my kids?” Dimitrakakos added. “To be put into the unthinkable position of trying to find a rare donor match through people you do not even know, I could not even imagine. Only 30% of people who have conditions where they need a donor find a match in their family, the other 70% are put in a position to find it amongst strangers. I’m glad to help in the search.”

Dimitrakakos wants to remind readers that you do not need to be Greek to help and everyone between the ages of 18-44 is welcome to participate. For more information on the marrow donor drive at Saint Andrew’s Greek Orthodox Church (5649 N Sheridan) on April 1, from 9 a.m.-1 p.m.,  go to the events Facebook event page.


Special Thanks to uofmhealth.org.

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