Hope for Ever

PALM BEACH GARDENS, FL (WFLX) - A little boy in South Florida is facing an extraordinarily rare syndrome.

Jason and Shona Pryce had the name of their baby boy picked out long before he was born. They named him Ever, after a song. "I love everything about him, his smile, his laugh," said Jason.

At birth, doctors learned Ever had a stroke while still in the womb, and that he had been born with HDR syndrome. It stands for hypo-parathyroidism, deafness, renal failure.

Shona recalls what doctors told her while she was still in the hospital. "That he was never going to leave the hospital. That he was going to die there," she said.

Ever was born with one abnormal kidney, a tiny airway and the damage from the massive stroke. "I was that mom to have that baby, and there is not a lot of help," Shona said.

The Genetic and Rare Diseases Information Center says fewer than one in a million babies are born with HDR. It is so rare, they don't even have estimates for life expectancy. "They said he would not be able to move, not be able to talk, wouldn't walk.  That I should be happy if he ever smiled or laughed," Shona said.  

Shona has had assembled a team of doctors and works with a pediatric physical therapist to help Ever with his challenges.

Elizabeth Keith, a pediatric physical therapist with Young Body Rehabilitation, says she has seen big improvements in Ever's abilities. "You [Ever] went from sitting in your infant seat, to being able to reach on your belly and crawl across the floor and stand," she said.

"I always thought Ever, like forever, like he would be here forever. [It] Had a good name to it," Jason said.  

But with a diagnosis so rare, his family doesn't know what lies ahead. 

"I said from day one, I don't worry about anything but for him to be laughing and smiling and happy in the world," Jason said.

If you would like to help Ever, you can donate to the "Hope for Ever Inc." at any Wells Fargo Banks. Your donation is tax deducible donation will provide additional therapy for this special little boy.

Follow Ever's journey on Facebook.

Copyright 2012 WFLX. All Rights Reserved.