Waukesha County family aims to raise $1M for toddler who suffers from rare fatal disease

 

MUSKEGO, Wis. (CBS 58) -- A family in Waukesha County is asking the community's help to save their 3-year-old daughter's life.

Olivia Stoop, also known as 'Liv', was diagnosed with a rare and fatal disease known as Sanfilippo Syndrome that primarily affects the brain, and they are making it their mission to raise a million dollars before it's too late.

"For the most part, she's still a fun, happy little girl but we know that at any moment she could start, you know, slowing down and eventually you know, she'll start to go in reverse, and we'll start to lose things like hearing her say 'I love you'," said Liv's father, Tyler Stoop. "Every time she has, you know, a milestone in her life like pedaling a bike or saying a new sentence or something, it's met with this bittersweet feeling because, you know, we're proud parents but then immediately we remember that there's going to be a time where we're going to see her do that for the last time as well."

Tyler and Erin Stoop noticed early on that their toddler was a little different from the rest of the boys and girls at her daycare.

After months of bloodwork and genetic testing, in March 2022, at the age of two, Olivia was diagnosed with Type B Sanfilippo Syndrome.

"Basically, your body is lacking an enzyme to break down a toxin in your body, so overtime, that toxin builds up in her body," he said.

It's described as childhood Alzheimer's. Type B mainly affects the brain, but it also impacts organs, muscles and bones; and seizures are also likely to occur.

"Typically, by the time they're six, seven, is when they lose their speech...10 or 11 they start having difficulty walking and ambulating and eating," explained Erin Stoop.

At the moment, there's no FDA-approved treatment or cure, and because of it, those suffering from the disease normally won't live past their teen years.

The Stoops said the hardest part will be having to explain it all to their baby son Liam.

"He might not know her the way we know her, you know, he might know her, he might not even know her voice besides what we show him on our phone," she said, with tears in her eyes.

This past Saturday, Olivia celebrated her third birthday, and the family hopes it's one of many more, still to come. The Stoops organized a GoFundMe page to raise at least a million dollars to fund research and start clinical trials.

"We know those trials are possible, we know that the research, so far, has been positive, you know, we just need to raise that money, to raise that awareness," Tyler Stoop said.

As of Thursday evening, the family has raised $162,960.

Click here, to learn more about their story, how to identify the symptoms and donate.