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BOIL WATER ADVISORY: McWorther Road in Harrison County
Eli's Story: Living With CdLS
Written by Matthew Baumgarten
Last updated on March 03, 2016 @ 7:17PM
Created on March 03, 2016 @ 5:51PM
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Eli is a happy, 4-year-old boy from Terra Alta. He loves playing with his toys and is
constantly bouncing around the house. But, Eli also lives with a rare condition called
Cornelia De Lange Syndrome, or CdLS.
Only 1 in 10,000 children are born with it.
"They did an ultrasound and he just wasn't moving, wasn't trying to breathe,” says Eli's
mother, Bethany Uphold. “So, then he was born, of course, and they knew right away that
he had the Cornelia De Lange Syndrome, because of the features and stuff. He was in the
hospital for 3 months before he actually got to come home."
Characteristics of CdLS include low birth weight, slow or abnormal growth, and small
stature, which can all lead to other health issues.
"He was born and he was 2 lbs. So, he was tiny. They told us that he wouldn't make it to a
year old. So, of course we were terrified. But, now, he's four, he's active. He doesn't quite
walk yet, but he is getting around and moving around. He learns how to do stuff his own
way," says Bethany.
Bethany says there have been positives and negatives throughout the process, but one of
the toughest things is that not enough people know what CdLS is.
"The hardest thing is the people that stare, or their kids want to ask questions, and they're
like ' No, no, no don't.' I would rather people come up and ask, rather than just stare."
While Eli has far exceeded the goals of his doctors, he has a new one: to attend the 2016
CdLS Foundation Conference in Orlando, Florida.
"We'll get to meet other kids, other adults with the syndrome, ranging from newborn to,
you know, it could be 60 years old” says Bethany. “There's doctors and therapists that
specialize in him, in this syndrome."
If you'd like to help Eli make his journey, you can visit their Go Fund Me Page by clicking
here, or visit the Fundraising for Eli Facebook page, here.
Bethany says no matter what happens, Eli inspires her everyday.
"It really makes you appreciate a lot of stuff, what you can do, and what he can do, even."
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Comments (1)
Mar 03, 2016 at 7:39 PM
Thank you guys so much for sharing our story!! We really appreciate it!
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