CARL JUNCTION, Mo. — A little girl from Carl Junction is living with an extremely rare genetic disorder.
Trisomy 18 is often deemed a terminal illness, but Eden Holly is defying the odds — surviving far longer than most doctors ever thought she could — and thriving.
Now her story is being spread in the medical community and also giving renewed hope to other children with the same condition.
Samantha Holly, Eden’s Mom, said, “We had the doctors come in and give us a google sheet with statistics on it. And just told us, she’s going to die. It’s not worth the fight.”
It was the last thing Samantha Holly expected after giving birth to her first child.
She was told her beautiful baby girl had a rare genetic disorder.
Dr. Teresa Crowe, Eden’s Pediatrician, said, “If they do make it to birth, about 50% of them will pass away within the first week of life. And only about 10% of them will survive past the first year of life.”
It’s a condition that occurs in about one in five-thousand live-births — called Trisomy 18.
“Trisomy 18 means you have an extra copy of the 18th chromosome. So instead of having 2 like most people do, you have 3.”
It impacts one’s ability to do things like speak, walk and eat — but as Eden’s parents quickly realized, her case was special.
“She has what’s called Trisomy 18 Mosaicism. Which means that not all the cells in her body have that extra chromosome, only some of them do.”
That small difference has been a saving grace for Eden, who is now seven years old.
“She loves movies and music. She loves going to school and playing with her friends. And she’s even got a little boy sweet on her already. And she just, she’s always happy,” said Samantha.
Getting here hasn’t been any easy road.
“She had two open heart surgeries before she was 1.”
Plus other surgeries to help her hips and feet.
“She has a very weak immune system, so we’ve dealt a lot with RSV and the flu and a common cold, so we’ve almost lost her a couple of times.”
But Eden is a fighter — taking a terminal condition — and treating it as anything but.
“These kids are worth it just like any other child. They deserve a chance.”
Now, Eden’s journey is being spread in the medical community — helping update literature and reduce stigmas around the disorder.
“People think that they aren’t really aware of their surroundings and what’s going on and what’s happening to them… and that’s definitely not the case. Eden definitely knows what’s happening to her,” said Crowe.
And inspiring other families whose children have Trisomy 18, not to give up.
“We get attached to all the kids like her. And every year there’s just handfuls that we lose them. So to know that she’s one of the ones giving the younger ones hope and helping their families with hope and inspiration is really really good,” said Samantha.
Eden is getting ready to celebrate her 8th birthday in May.
Her parents are hopeful they’ll get to see her graduate high school some day.