Four-year-old Veda UIrich of Palm Coast is facing a terminal and degenerative illness.
Her parents Christin and Jericho Ulrich found out in the most unexpected way.
“Veda was about 14 months old, and she wasn’t talking as well as kids her age, she kept getting a lot of respiratory and ear infections,” Christin Ulrich said.
Veda’s parents had a feeling something wasn’t right.
[EXCLUSIVE: Become a News 6 Insider (it’s FREE) | PINIT! Share your photos]
“We took her to her first doctor, and he kind of blew off our concerns, so I got a second pediatrician who started testing, ruling out the more common issues a child could have,” Christin Ulrich said.
They set up a genetic test appointment for Veda, but it was scheduled a year out.
“It’s frustrating; we know how rare Sanfillipo Syndrome is, but I think that a lot of rare syndromes have very distinctive features in their children — especially Sanfillipo Syndrome — and we just wish there was some type of way pediatricians can get more information more awareness,” Christin Ulrich said. “That way, kids aren’t going undiagnosed for so long. It’s very frustrating when you know something’s wrong and your doctors can’t help you.”
One night, Christin was scrolling on TikTok when she saw this video.
@haidynshope Answer to @kitryrainwolf ♬ Emotional Piano Instrumental In E Minor - Tom Bailey Backing Tracks
It was from an account called “Carrie + Haidyn.” The account is run by the mother of a young girl, who also has Sanfillipo Syndrome.
“I came across Haidyn’s video, and Carrie was talking about Sanfillipo Syndrome, and my initial reaction was like, ‘Wow, she looks like Veda, they could be twins,’” Christin Ulrich said. “As soon as I saw her and then saw the symptoms of Sanfillipo Syndrome, it felt like somebody punched me in the gut.”
Veda was diagnosed with Sanfillipo Syndrome in 2022.
“We learned that she’s going to lose her ability to talk to us probably within the next year or so. She’s going to lose her ability to walk, to eat by mouth, she’ll need a feeding tube, she’s going to suffer from seizures muscles,” Christin Ulrich said. “...And then in her teens, we’re going to lose her.”
Jericho Ulrich said they had dreams for Veda. They hoped to see her go to school, get a job and have her own kids.
“Getting that diagnosis made us realize that those things aren’t (going to) happen,” Jericho Ulrich said.
Veda’s parents are raising money for a clinical trial in hopes doctors will treat multiple children with Sanfillipo Syndrome, including Veda.
“Not enough peopling knowing and caring about it — the donations do not come in,” Christin Ulrich said.
The Ulrichs said the more people who know about syndrome, the better. That’s why they have multiple signs in their front yard with a QR code that takes you to this GoFundMe.
Their goal is $500,000.
Although Veda can’t really understand much right now, there’s something her parents want her to know.
“God, how much we love her and how much we’re (going to) do anything we can to save her and if we can’t save her, we’re still (going to) do things in her honor; and like before we die, we’re going to make sure Sanfillipo Syndrome has a cure. We’re not (going to) stop,” Christin Ulrich said.
Get today’s headlines in minutes with Your Florida Daily: