WAUKESHA, Wis. — One family in Waukesha County is hoping to raise $1 million to help find a cure for their daughter's disorder.
In March 2022, 3-year-old Olivia Stoop was diagnosed with Sanfilippo Syndrome Type B, a genetic degenerative brain disorder in children caused by a single missing enzyme. According to her mother, Erin, it is 100% fatal and there's currently no FDA-approved treatment or cure.
So, following their daughter's diagnosis, the Stoop family decided to turn to the community in an effort to raise money and find a cure. They created a GoFundMe, sharing Olivia's story and asking for donations.
"Because Liv lacks this single enzyme, toxic cellular waste material is building up in her brain every second and damaging it. As the degeneration rapidly progresses, Liv will stop walking, stop talking, stop being able to feed herself," the family wrote on the GoFundMe page. "She'll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then she'll die. All in the coming years."
The Stoop family's goal is to raise $1 million and in just three days, they have raised more than $133,000.
"Our goal is to raise $1 million dollars [sic] to fund the research that could lead to a clinical trial and give Liv a chance at growing up, a chance at life. We can't just sit back and accept that she's going to fade away and die, not when there is something we can do to try to save her," the GoFundMe says.
According to the GoFundMe page, there are already promising forms of treatment that just need further funding to continue into the trial stage. Those treatments include gene therapy and drugs already used for other diseases.
The Stoop family said this fundraiser is as urgent as it gets. Their GoFundMe page says the fundraiser is "Liv's only chance." And even with the funding and possible trials, it's no guarantee that Olivia would even be accepted into said trials.
In addition to funding, the family is also asking people to share the GoFundMe and take any avenue they can to make the page go viral.
To donate to the GoFundMe and read Olivia's story,click here.
