ALBEMARLE, NC (WBTV) - Seven-month-old Sadie lives in Albemarle. She is healthy now but will regress – lose the ability to walk, talk and eat – once she hits two years old. She'll eventually die in her early teens because of an awful, deadly disease called Sanfilippo Syndrome.
"It's hard to imagine she may have already lived a quarter of her 'normal' life," said mom Ashley Haywood. "A clinical trial right now shows great promise, but it's only available to a few children."
Ashley says her daughter is the happiest baby in the world. She says she had complications at birth, lived in NICU at Levine Children's Hospital her first 73 days, has had five surgeries in her seven short months and… yet… still smiles constantly.
The Sanfilippo diagnosis came June 27th.
"A day I'll never forget," says Ashley.
Sanfilippo is an orphan disease (meaning 1 in 70,000 kids) so it doesn't receive much funding for research.
"My husband Jason and I are doing all we can to help raise awareness," Ashley said. "I mean, what other options are there? We're hoping to help raise money to fund more trials before it's too late for these kids."
If you're heard of Sanfilippo before, maybe it's because a few other kids in our area battle. One is Abby Grace Ferguson, a longtime one of our #MollysKids. Her family has been publicly trying to get people to realize the horror of Sanfilippo for years.
To read more about Sadie >> http://www.facebook.com/savingsadierae
"Sadie loves tummy time and has a favorite toy dog named Bow Wow," Ashley said. "She's a totally normal baby girl who dances, sings and lights up… only except her future isn't normal at all. Her dad and I know it's going to change."
Here's a new video about Sanfilippo and the first child to receive the clinical treatment (Sadie is shown at the end):
Hopefully Abby Grace's family – or any other family in the area who has a child with the same diagnosis – will see this and you guys can connect. (Reach out to each other in comments below if necessarily. Easy way to network!) There always seems to be power in numbers.
And please, keep up updated. Sadie is beautiful.