Big step taken towards treatment for Willow
OCEAN SPRINGS, MS (WLOX) - Right now, a big step forward for one coast family in the fight against a rare disease. Five-year-old Willow has been living with Multiple Sulfatase Deficiency for about two years. Now, the foundation started by her mom Amber Olsen has received word that the FDA will hear her case and consider approving clinical trials for a treatment.
Olsen has been diligently fighting for a treatment for the extremely rare disease. "It's not fair that just because she was born into a disease that is small, she should still have the opportunities of larger diseases where they have treatments," she said.
A big challenge for Olsen and the foundation has been finding enough support to research the disease that so few have been diagnosed with. But, a year and a half of processing and testing a gene therapy treatment on mice has produced some promising results.
"I hear about what's happening with the mice every other week. They're living longer," said Olsen. "From a foundation perspective, it's amazing but then I just want her to have the treatment. It's just hard to separate that. I mean, I'm a mother first."
Approving clinical trials would be a huge step towards Willow potentially receiving treatment. Although it could be another year before that happens, Olsen is now tasked with coming up with funding for the $1.3 million the trials will cost, pending FDA approval.
Since this strong family was originally told that Willow wouldn't make it to five-years-old, Olsen says they're using her fifth birthday to kick off the fundraising. "So we're celebrating with an open party at Lynn Meadows on October sixth," said Olsen.
She's hoping the support will only snowball from there, not only for her child but all who are fighting this rare disease. "I don't want any other parent to have to go through it," she said.
Willow's birthday bash will be at the Lynn Meadows Discovery Center on October sixth from 9:30 a.m. to 11:30 a.m. Admission will be $15 for children, adults can enter for free, but donations will be accepted.
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