Muskego family helps raise millions for rare childhood disease treatment
Muskego family helps raise millions for rare childhood disease treatment
A Muskego family helped raise more than $5.5 million to fund early access treatment for children with Sanfilippo syndrome after their daughter Liv was diagnosed with the rare disease.
MUSKEGO, Wis. - Three years after receiving a devastating diagnosis for their young daughter, a Muskego family is now celebrating a major fundraising milestone that could help children nationwide living with Sanfilippo syndrome.
What we know:
Liv Stoop was just 2 1⁄2 years old when her family learned she has Sanfilippo syndrome, a rare genetic disorder often described as childhood Alzheimer’s disease. The condition prevents the body from breaking down certain cellular waste, causing progressive damage to the brain and other organs.
Since the diagnosis, the Stoop family has focused on raising money for research and treatment. When FOX6 first introduced viewers to Liv just a few years ago, the family’s goal was to raise $1 million.
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Now, years later, that effort — alongside more than a dozen other families — has helped raise more than $5.5 million.
Muskego family seeks Sanfilippo syndrome cure
Muskego parents were given a life-changing diagnosis. Their 3-year-old girl has a rare genetic disorder with no cure, but the family is not giving up hope. They're asking for your help as they launch a massive fundraising campaign.
The past several years have taken a toll as Liv’s condition has progressed.
What they're saying:
Her parents say she has lost much of her ability to communicate verbally and has become less steady on her feet.
"She’s basically lost all of her words," said Erin Stoop, Liv’s mom.
"She’s more unstable on her feet. She gets tired quicker going up and down stairs," said Tyler Stoop, Liv’s dad.
Last November, families affected by Sanfilippo syndrome set a new goal: raising $5.5 million to fund an early access program for enzyme replacement therapy. Erin Stoop said the target initially felt impossible.
"I remember saying this is not possible. There’s no way these families can do that," said Erin Stoop.
In just six weeks, families and donors reached the goal, allowing 14 children to take part in the early access treatment program. The therapy is scheduled to begin in July and will last one year.
Dig deeper:
The Stoops do not yet know whether Liv will be selected to receive the treatment, but they say they remain focused on cherishing each day with their daughter.
"She just can’t communicate through words, but she tells us she loves us in a lot of other ways," Erin Stoop said.
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"She’s happy. She’s fairly healthy. She hasn’t gotten to the worst part of the disease yet, and I think if we could keep her in this stage, it'll be worth it," Tyler Stoop said.
Even after reaching the $5.5 million goal, the Stoops say fundraising efforts will continue as families hope treatments will eventually receive FDA approval.
What you can do:
A GoFundMe remains active to support Liv and ongoing research.
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The Source: The information in this post was collected and produced by FOX6 News.