NC teen only one of 50 people in world to live with condition

NC teen only one of 50 people in world to live with condition
Eldon Self (Source: Self Family)

LELAND, N.C. (WBTV) - Meet Eldon Self. He lives in Leland in Brunswick County, but travels to Charlotte often for tests and treatments.

Eldon is one of those kids you hear about and – his mom Patricia is the one who said this – has so much going on it’s sometimes hard to answer the questions people ask. To begin, Eldon is one of 50 people in the world living with Baraitser-Winter syndrome. This is a progressive condition that affects development, particularly in the face and brain.

That’s a tough thing to handle when you’re 15 years old. Eldon is about to start his 9th grade year at North Brunswick High School, but will receive home bound classes, something his mom says he’s used to.

“We get treatments in Charlotte and heard about #MollysKids while at Levine Children's Hospital,” Patricia said. “So few people are diagnosed with what my son is handling, I just wondered if you could write about him? Maybe there’s someone else out there in our area who knows a little more? Or has a battle with the same thing? Eldon is about to take part in a German study that aims to learn more about this syndrome. We also hope that will give us answers.”

Patricia says Eldon faces multiple conditions – not just this rare syndrome. He lives with hearing loss, autonomic dysfunction, chronic intestinal pseudo obstruction, asthma, autism, scoliosis, intellectual delays, blood clots, and osteoporosis. Among other things. Eating is also a difficult process for his body; he receives all nutrients from an infusion pump.

Could all those conditions stem from the Baraitser-Winter syndrome? Maybe. Patricia says doctors aren’t fully sure because again, so little is known. They do know the syndrome is for sure the cause of the scoliosis, osteoporosis, muscle tissue problems, and hearing loss.

As if that’s not enough for Patricia, Eldon also has three older brothers and an older sister… ALL who have had to undergo brain surgeries for chiari malformations.

"Eldon has been a fighter pretty much his whole life,” Patricia said. “He went from being a child that could run and jump to a child who is now wheelchair bound, but he is still the strongest little boy I know.”

Patricia's attitude, by the way, is also amazing.

“He is an inspiration and my hero,” she added. “He has been told he wouldn’t pull through some past moments, and he always has.”

If you know anything about Baraitser-Winter Syndome, please comment below. Patricia is looking for a network. Someone to talk with or to compare stories. She'll see your note below. Or, if you’d prefer to write her a personal email send it to me at mgrantham@wbtv.com and I’ll connect you both.

#MollysKids

*Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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