New hope for baby born with rare immune disease NEMO

Posted at 1:03 PM, Oct 13, 2018
and last updated 2018-10-13 14:03:22-04

This past summer we told you about 11-month-old Elias Argirokastritis. He was born with a rare immune disease called NEMO.

His illness forced him to be isolated in the house or the hospital. Elias could not go outside and play because an infection could kill him.

His mom talked to TODAY'S TMJ4 via Skype.

"Anywhere there could be viruses or bacteria we try to stay away from," said Evelyn Argirokastritis.

At the time his family was in desperate search for a bone marrow match. They appealed for help through social media, and bone marrow drives were held all over the world, including Tosa's Greek Fest at Saints Constantine and Helen Church. Volunteers were swabbed to see if they were a match.

"Elias is Greek and you are more likely to match with someone if you share a heritage with them," said Olivia Haddox, DKMX donor recruitment coordinator. "So we've been reaching out to several different Greek Fests and Greek communities across the country and they've been really welcoming."

In October the family got great news. Though the search continues for a bone marrow match,  doctors found a suitable cord blood match.

On Facebook, Evelyn expressed gratitude.

"I just want to thank everyone for their support," she said. "We wanted to share the amazing news with you and we are so excited. People rallying and help save my son's life it means the most. There's nothing a mother wants more than for her child to live."