14 month-old Ryker Warner passed away last Friday from Heterotaxy Syndrome. It’s a rare disorder that affects only four in one million babies.
“He was just the most amazing baby, the sweetest spirit,” said Rachel Warner, his mom.
Doctors only gave Ryker eight days to live when he was born. “Heterotaxy basically means a different arrangement of organs, so he had half of a heart, his stomach was on the right side of his body instead of the left,” said Rachel.
Jason and Rachel were willing to do what ever it took to give their son any chance at life. So days after he was born they took Ryker to Boston Children's Hospital. “The top-rated cardiac surgeon in the world was there.”
The Warners packed up the family and house knowing Ryker's hospital visit wouldn't be a short one.
“Surgery after surgery and incubation after incubation, I mean 11 months his was in the cardiac intensive career unit, he didn't leave,” said Jason
While there, friends and family set up a Facebook page in support of Ryker's fight for life. The ‘likes’ and comments started to mount. It wasn't long before Ryker's fan club grew to more than 24,000.
“It’s amazing to get on there and read these things, it's almost surreal,” said Rachel. “This is us and our baby that are touching these peoples lives, we're ordinary people.”
Ryker's celebration of life will take place Saturday in Riverton. Jason and Rachel want to be sure the people around the world who've given their support can be apart of it. For those who cannot attend, please join us online where ABC4 will broadcast the celebration.
To watch the live broadcast, click here.