- November 22, 2024
-
-
Loading
Loading
The Ulrich family look at a card the Jeep organizations made for four-year-old Veda Ulrich. Photo by Sierra Williams
Sheriff Rick Staly hands Veda a stuffed bear after the parade. Photo by Sierra Williams
One participant of the Jeep parade left Veda a diorama with toy Jeeps on it. Photo by Sierra Williams
Most of the Jeep owners left gifts for Veda with the Ulrich family. Veda's sister Elise took the gifts on her sister's behalf. Photo by Sierra Williams
Most of the Jeep owners left gifts for Veda with the Ulrich family. Photo by Sierra Williams
Most of the Jeep owners left gifts for Veda with the Ulrich family. Photo by Sierra Williams
Sheriff Rick Staly led the way in the parade to Veda. Photo by Sierra Williams
Sarah and Charlie Brown and their two children with Sheriff Rick Staly. Photo by Sierra Williams
The Ulrich family: Jericho and Christin, Elise, 11, and 4-year-old Veda. Photo by Sierra Williams
Local Jeep enthusiast Charlie Brown said he came home one day and found his wife, Sarah, crying over a video describing 4-year-old Veda Ulrich's fight with a terminal genetic condition called Sanfilippo Syndrome.
Veda was diagnosed with the terminal genetic illness Sanfilippo Syndrome in September 2022, at just 2 years old. Children with Sanfilippo typically die of the disease in their early teens, though it varies. There is no cure, and no FDA-approved treatment.
Sarah Brown said she and her husband really sympathize with the Ulrich family: both husband and wife work in the health care fields, and their daughter is also just 4 years old.
"Just to see, you know, what this family is going through in our community — we wanted to find a way to support them," Sarah Brown said.
Brown said his wife turned to him and asked if there was anything he and his Jeep friends could do. And there was: Brown said over the last three weeks he has been reaching out to local Jeep enthusiast organizations — Daytona Jeep Club, Volusia Jeep Club, Mid-Florida Jeep Club — and organized a Jeep parade for Veda on March 23.
Brown reached out to the Flagler County Sheriff's Office while planning the parade and Sheriff Rick Staly and several deputies decided to join in the fun.
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.
Sanfilippo Syndrome is similar to Alzeihmer’s, but in children. 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.
The Ulrich family, in conjunction with the Cure Sanfilippo Foundation, launched a fundraiser called Saving Veda for a new clinical treatment trial for the genetic illness. So far, Saving Veda has received almost $33,000 in donations, as of March 24.
Charlie Brown even secured a $500 donation to the Saving Veda fundraiser from Jeep Beach, a large, annual Jeep-enthusiast event in Daytona Beach.
Christin Ulrich, Veda's mother, said she had not expected such a turnout.
"Honestly I thought it would be, like, a few jeeps," Ulrich said. And, she said, she had no idea Staly and FCSO deputies would be joining in until just a few days prior to the parade.
Staly said he made sure he could attend the parade once he heard what and who it was for. The Sheriff's Office has been a part of similar, special-occasion parades since the COVID-19 pandemic, Staly said.
"I don't think there's any better way to show community support for a family than an event like this. And the sheriff's office is glad to be able to participate," he said. "We hope it brightens the family's day a little bit."
Ulrich said she's grateful for both the support from everyone who attended and the donation to the Saving Veda fundraiser. They're hoping the fundraiser will pickup speed and gain more traction and awareness, especially with Staly's support as well.
"We understand times are hard for people," Ulrich said. "But we're hoping that the more and more and more it gets out there that we will get the funds that are needed [for the clinical trial]. Because without it, Veda doesn't have a shot."
