MUSKEGO, Wis. — A Muskego family is turning heartbreak into hope after their 5-year-old daughter received a devastating diagnosis of a rare, terminal illness.
Erin and Tyler Stoop have raised more than $461,000 for research into Sanfilippo syndrome through their social media campaign “SavingLiv,” named for their daughter Olivia.
“We may not find a treatment for Liv that is going to save her life, but we could potentially find a treatment for other children,” Erin Stoop said.
The family’s journey began in 2022, when Liv started experiencing concerning medical symptoms, including persistent stomach issues and sinus infections. What they initially thought might require a gastroenterologist’s care led to an unexpected and devastating diagnosis.
“We weren’t remotely close to a fatal genetic disorder,” Erin said.
Sanfilippo syndrome, often called childhood Alzheimer’s, causes progressive neurological deterioration. Though technically different from the adult version of Alzheimer’s, the effects on the child’s body and mind follow a similar pattern of decline.
In the past year, the Stoops have watched their daughter’s condition worsen significantly.
“In the last year she has declined considerably. She knows how to say ‘Mommy’ and ‘Daddy’ and a few other words,” Erin said.
Now 5 years old, Liv has regressed to approximately the mental age of a 1-year-old. As the condition progresses, she will gradually lose her ability to speak, walk and eat.
The most devastating aspect for the family was learning there were no medical interventions available.
“We were devastated to learn that there were no clinical trials currently available. And there hasn’t been one in the United States since her diagnosis,” Erin said.
The news sent the family into a dark period.
“The first year was pretty dark. We didn’t have a lot of motivation to do much,” Tyler said.
After connecting with the Cure Sanfilippo Foundation, the Stoops found renewed purpose. If no clinical trials existed, they would help fund the research needed to create them.
Erin launched TikTok and Instagram accounts called “SavingLiv” to share their daughter’s story and raise awareness. The response has been overwhelming, with more than 210,000 followers on TikTok and 20,000 on Instagram.
“We have raised $461,000 since we launched her fundraiser in December 2022. So we would love to, by this December, raise $500,000—or half a million—for research,” Erin said.
Watch: Muskego mom uses TikTok to try to fight her daughter's terminal illness
Though Liv’s regression has advanced to a point where she may not qualify for future clinical trials, her parents remain committed to their mission.
“When we got her diagnosis and we scrolled down to treatment options, and it was supportive options only—that is when we felt like our hearts were ripped out,” Erin said. “And if we can change that in the future and put an option in there for families so that they can have a little glimmer of hope—because we felt like we had no hope.”
To donate to the Stoops' fundraising efforts for Sanfilippo research, you can click here.
This story was reported by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
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