Palm Coast girl has rare fatal disease, family raising money for therapy

PALM COAST, Fla. - Veda Ulrich is 4 years old. She loves to jump and play like most kids, her age. 

When she was younger, though, her parents, Christin and Jericho, started to see signs that she was different.

"I was scrolling on TikTok one night, and came across a little girl named Hayden who had the same syndrome," Christin said, "and my first instinct was that she and Veda looked like twins. We had some medical concerns for Veda, so I reached out to her doctor, and told her I was concerned that she had Sanfilippo Syndrome, and they tested her for it, and it came back positive."

You may have never heard of Sanfilippo Syndrome, but it's a devastating diagnosis. 

Glenn O’Neill helps run the Cure Sanfilippo Foundation. He said the cells in these patients' bodies and brains have a genetic defect where they can't properly clear-out waste.

Veda Ulrich is 4 years old. She loves to jump and play like most kids, her age. When she was younger, though, her parents, Christin and Jericho, started to see signs that she was different.

"It's often referred to like you don't take out the trash for a week in your kitchen, you know, one bag, two bags, but then starts building up to a point where you can't even move in the kitchen, so that's what's happening in these kids' brains and bodies," O'Neill said. 

As the toxins collect in their bodies, children like Veda eventually lose their abilities to speak, walk, and even eat. Most of them pass away as teenagers. The Ulrichs asked their doctor what they could do. 

"The answer we got was go home and love her, while you can," Jericho said.

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Like any good parent, the Ulrichs couldn't accept that answer. They're trying to raise the half-million dollars it will take to enroll Veda in a clinical trial, a gene therapy program that holds the promise of – at least – slowing down the disease progression, by teaching her cells how to clear-away the toxins.

 "So if we raise the money, they can make the medication for the clinical trial. It doesn't guarantee that Veda gets a spot if we're the ones that raise the money, but our hope is to get a trial started, and it gives at least some of our kids a chance," Christin said.

Experts say kids with Sanfilippo Syndrome have similar facial features and developmental problems. It takes a genetic test to confirm the disease.

As of Thursday, the Ulrichs have raised about $38,000 towards enrolling Veda in the clinical trial. 

Christin also credited TikTok for giving families with Sanfilippo Syndrome a platform to spread awareness.

"TikTok has been instrumental in Veda's diagnosis and the diagnoses of nine other children. The little girl Hayden has been the face that has helped diagnose nine other kids."

You can find more information at SavingVeda.com.