Clearwater 'miracle baby' with Trisomy 18 defies the odds

CLEARWATER (FOX 13) - Adeline Allen looks at the glass half full.  Her 6-year-old daughter Riley was diagnosed with Trisomy 18, a very rare condition that causes severe developmental delays. 

During her pregnancy, doctors said there was a 10-percent chance of her making it to her first birthday. Six years later, Allen says she couldn’t imagine a life without her.

“She’s my miracle baby,” Allen offered.  “We didn’t know what to think. We didn’t know if she was going to make it. All we were doing is giving her a chance.”

According to the Trisomy 18 Foundation, only a small number of those affected live to be in their 20s or 30s, relying on full-time caretakers.

Riley eats through a feeding tube. The tracheotomy keeps her airway open. An oxygen tank helps her breathe.

“I’ve been told she’s never going to walk, most likely never will talk," Allen said. "She doesn’t communicate with you, but her eyes communicate.”

With every smile, Allen knows even if the statistics aren’t in her daughter’s corner, she’ll always be there.

“It’s all about how you fight for your children with special needs that makes them thrive, because if I didn’t fight for her, she wouldn’t be here.”

Allen says she wishes there were more events and groups raising awareness about Trisomy 18.  The oldest living person with the condition is a 35-year-old woman in New York.