FRIENDSWOOD, Texas — Behind Nola Carter’s adorable smile, there is a very sad story.
“It’s a devastating kind of future to think about for her and for any child,” said Nola’s mother Shiloh Carter.
Nola’s family in Friendswood tries not to think about it day-to-day, but knew something was wrong when Nola went for a checkup and wasn’t crawling or even pulling herself up by her first birthday.
The 15-month old was diagnosed with a rare genetic disease called Sanfilippo Syndrome Type A. It’s a disorder that involves a genetic error, a missing or defective enzyme, progressive brain damage and an early death.
Nola is not expected to survive past the age of 15.
“Daddy was crying once,” said Nola’s big sister Caden. “I was like this is just weird. I thought they were strong.”
Six-year-old Caden doesn’t quite understand the fight her family is in, because right now there is no cure.
The girls’ father Derek Carter struggles with being helpless.
“That’s frustrating as a dad,” admitted Derek Carter. “It’s hard because you want to be able to fix everything.”
Her family is helping to raise money to help fund a Sanfilippo clinical trial in Ohio later this year. They will try and get Nola in, but will keep fundraising to help anyone diagnosed with Sanfilippo.
It’s believed that Nola is the youngest person in the world to be diagnosed.
Below are ways you can help the Carter family and others with the disorder.
- People can get info about their events on their Facebook page - Facebook.com/TeamNolaCarter
- On their crowd funding site - Nola, Sanfilippo, & the Fight to Save Her Life
Team Sanfilippo is the organization they are fundraising for www.teamsanfilippo.org. All contributions are tax deductible through Team Sanfilippo’s 501©3 nonprofit.