- April 26, 2024
-
-
Loading
Loading
Veda with her father Jericho Ulrich. Photo courtesy of the Ulrich family
Four-year-old Veda with her parents Christin and Jericho Ulrich and 11-year-old sister Elise. Photo courtesy of the Ulrich family
Four-year-old Veda with her parents Christin and Jericho Ulrich and 11-year-old sister Elise. Photo courtesy of the Ulrich family
Parents Christin and Jericho Ulrich began noticing problems with 4-year-old Veda’s development when she was just 14 months old.
Veda was not developing at the same rate as some of her older cousins, nor as their older daughter Elise, 11, did at Veda’s age. For months, the Ulrichs took Veda to doctor after doctor, searching for a diagnosis, without success.
The answer unexpectedly came from the social media platform TikTok and the account @haidynshope, which follows Haidyn Fowler, a child in Georgia with Sanfilippo Syndrome.
Christin Ulrich was scrolling through videos when she came across the little girl who looked just like Veda.
“I still think that there is a possibility that we wouldn't have known right now if it wasn't for the video of Haiyden that popped up on Tik Tok,” she said.
The Ulrichs said they spent every spare moment trying to find information that disproved their theory. The more they learned, Christin Ulrich said, the more Veda’s symptoms matched.
Haidyn and Veda almost looked like twins at that age, Jericho Ulrich said.
"I kept trying to tell myself that she didn't have it," he said. "But in the back of my head, I kind of felt like she did."
At 2 years old, in September 2022, a genetic test confirmed the worst: Veda had Sanfilippo Syndrome.
Sanfilippo Syndrome is a terminal neurodegenerative genetic illness, caused by a missing enzyme, according to the nonprofit Cure Sanfilippo Foundation’s website. It affects 1 in every 70,000 births.
It’s like Alzeihmer’s, but in children, Christin Ulrich said. Children diagnosed with Sanfilippo reach a peak in learning new skills — usually around 2 or 3 years old, the Foundation’s website said — and then begin to decline, losing their skills and mobility until they are unable to walk and need a feeding tube.
Children with Sanfilippo typically die of the disease in their early teens, Christin Ulrich said, though it varies. There is no cure, and no FDA-approved treatment — not even the geneticist had any information to give them, she said.
“They handed us a pamphlet, and were basically like, love her while you can," she said.
SAVING VEDA FUNDRAISER
After living two years with Veda's diagnosis, the Ulrichs have partnered with the Cure Sanfilippo Foundation to launch a fundraiser for a new clinical trial treatment, called "Saving Veda." The treatment is still in the preclinical stages, Christin Ulrich said.
Treatments for Sanfilippo are few and far between and some, she said, have high risks to go with them. One treatment involves stem cell injections, she said, but comes with a 20-40% risk of death.
The Cure Sanfilippo Foundation and the Ulrichs began the "Saving Veda" fundraiser campaign to raise a minimum of $500,000 to help fund the treatment's clinical trial, which would pay for a select few children to receive it.
Advocating to raise the funds does not guarantee Veda a spot, Jericho Ulrich said, but it gives her a chance.
"She doesn't get a shot at all if we don't get the money for the trial," he said.
LIVING WITH SANFILIPPO
The day Veda’s diagnosis was confirmed, Jericho and Christin Ulrich said it was the worst outcome they could have imagined.
Two years after the diagnosis, Veda is more like a big 2-year-old than a 4-year-old. She loves the water and going to the beach, Jericho Ulrich said — the family often goes to the beach to watch her enjoy the waves.
One of the more difficult things has been watching Veda interact with her cousins, Christin Ulrich said, and knowing that her cousins might one day forget Veda, when they get older and Veda does not.
Typical childhood development is an upward progression. With Sanfilippo Syndrome, children start losing learned skills around the ages of 2 and 3 and losing mobility around the age of 10, the Foundation website said.
Jericho Ulrich said Veda has hit a plateau — where she forgets one word or skill, she'll pick up another. There's no way to know how long Veda will hold at that plateau before she begins declining, or how rapid that decline will be.
The Ulrichs have found a close support group with other Sanfilippo diagnosed children and families, including Haidyn Fowler.
"It's like a double edged sword," Christin Ulrich said. "We go there and we see this beautiful little girl and Sanfilippo Syndrome is taking her away and we know that that's what our future is going to look like if Veda doesn't get any treatment."
She hopes people will share Veda's story and either donate to or spread the word on the Saving Veda fundraiser. Even if Veda is not chosen for the clinical trial, she said, it will help other children just like her.
"Raising this money does not guarantee Veda a spot," she said, "but we love these kids like they're our kids ... Even if Veda doesn't get [it], we want another child to have a shot at it."
