Home » ‘She Loves Hard’: Central Illinois Family Spreading Awareness on Rare Sanfilippo Syndrome Impacting 7-year-old
Global News Health Illinois News

‘She Loves Hard’: Central Illinois Family Spreading Awareness on Rare Sanfilippo Syndrome Impacting 7-year-old

It’s never easy to see a loved one battle a disease, but it’s especially tough when it’s a kid. On Saturday in Urbana, hundreds gathered around seven-year-old Kinley Nash, a little girl staying strong and pushing on.

“She has a lot of energy, she’s very happy, she loves hard,” Ashley Nash, Kinley’s mom, described.

She and her husband Brandon are fighting hard for their little girl.

“We always joke that if you need a pick me up or need a compliment Kinley’s the one to do it,” Brandon Nash added.

Their whole world changed when Kinley was in kindergarten and they noticed she wasn’t at the same academic level as her classmates.

After an ADHD, autism and anxiety diagnosis, they knew the medicine wasn’t working and pushed for genetic testing. That was the answer to their questions, and how they learned Kinley had Sanfilippo Syndrome.

“It basically attacks the brain which the brain affects everything in the body,” Brandon Nash explained.

Sanfilippo Syndrome is rare and affects fewer than 200,000 people in the United States. It’s similar to Alzheimer’s or dementia.

“All the skills she gains, she will eventually lose,” Ashley Nash said.

No parent wants to hear it, but the Nash family isn’t letting it hold them back. They’re pushing forward.

“I knew when we got this diagnosis we were going to face it head-on. If it’s not for Kinley’s benefit, she’s going to be the reason that we fight toward it,” Ashley Nash said.

Spreading awareness is one step toward that, raising money for her and future research. There are no doctors in Central Illinois to treat Sanfilippo. The Nashs travel to Ohio for appointments.

“We travel to Cincinnati so we’re out the cost of travel expenses, lodging, meals. A lot of it will go toward her care and then future needs,” Brandon Nash said.

They’re thankful they aren’t doing it alone. Hundreds of people came out for Kinley and the disease that changed her life.

There are a lot of unknowns. Eventually, they said Kinely will be in a wheelchair and need feeding tubes. Right now, there is no FDA approved treatment or cure.

If you want to support Kinley and the Nash family, visit this link.

Source : WCIA