ORLANDO, Fla. (WOFL FOX 35 ORLANDO) -
You could say Roger Chapin is singing for his daughter's life.
"We're really in a race to raise dollars as fast as we can," said Chapin.
He started singing to his daughter, Blair, years ago.
"Now if she's having a difficult night or something, I just sing to her, and it seems to always kind of calm her down."
Blair was diagnosed with Sanfillipo Syndrome when she was six years old. It took doctors from all over the country years to figure it out.
Chapin said the symptoms were difficult to diagnose.
"They weren't obvious to us, but as we began getting her ready for school, we just found some developmental delays in her speech, in her motor skills, that basically pointed to the fact that there's something going on," said Chapin.
Sanfillpo is an inherited disease. It can lead to an inability to walk, talk, or feed yourself. Symptoms typically take years to appear.
Chapin and his wife remember the moment they first heard the diagnosis.
"Disbelief," said Chapin. "Because at the time, Blair was still talking and jumping and playing and very happy so when the doctors told us what it was and what was to come, then you start doing your research. it just becomes your worst nightmare."
Life expectancy for those with Sanfillipo is somewhere in the teens. Blair is 12.
Home videos showed her talking as a toddler. Now, Blair doesn't speak.
"She communicates like a baby would really," said Chapin.
Walking and standing can be a little difficult.
There's no cure, but a potential one is out there.
"We're hoping to start clinical trials in January," said Chapin. "But it all comes down to money and we have to raise millions of dollars to take it to the next steps."
Chapin said Sanfillipo is an "orphaned disease," which means the big research dollars don't funnel down to those studying Sanfillpo Syndrome. He said that means it's up to the families of little ones with Sanfillipo to raise the majority of the money.
"It just kind of came to me that maybe I can try to raise some funds around the concept of singing for Blair and funding a cure," said Chapin.
One thing that comforts Blair is music and songs. Chapin combined one of Blair's favorite shows, American idol, with his fight to keep her alive. He posted a clip of himself singing a lullaby to Blair. The father of two is hoping to raise $25,000. All of the money raised will go toward research.
"I would watch shows like American Idol and if a contestant was voted off, they would give them another opportunity to sing for their lives," said Chapin. "I just thought, I'm kind of singing for Blair's life."
The family hopes to get celebrities -- musicians, actors, and athletes -- to sing for Blair, before it's too late.