CHARLOTTE, NC (WBTV) - Finn Muedder turned four on May 5. I missed mentioning his birthday, but am NOT missing what today means to this south Charlotte boy.
Today, May 15 is MPS Awareness Day. Finn has Hunter Syndrome-MPS II. Currently has no cure and means his lifespan is 10-15 years. We've featured Finn before – remember Facebook live in his living room last summer? Finn's parents are obsessed with raising big money to fund a gene therapy clinical trial they think could save their son.
Today is a big day for them.
The entire trial costs $2.5-million. Last year they raised enough — $1.1-million — to start making the drug. IT'S IN A LAB RIGHT NOW and will be ready in July.
Today is his parent's final sprint to raise the rest so Finn can begin the drug when it's ready. Knowing that, his mom Allison had a crazy idea:
Get 100,000 people to donate $15 on May 15th.
So began a #15byMay15 campaign on their well-run website, https://www.projectalive.org/donate/.
She says if everyone does, the drug is funded.
This is not just about Finn. Hunters Syndrome is rare, yet, Easton Walker, a 1-year-old in Forsyth County who is another one of our #MollysKids, lives with the same thing. Two more children in the same family in York County, SC also live with Hunters Syndrome (imagine that??!?). I'm waiting to hear back from their mom before writing more about their lives.
But isn't it crazy? These rare illnesses that children do nothing to deserve leave them spending their lives fighting? And the money – oh, the money. The ludicrous amounts of money that PARENTS become responsible to raise in order to get drugs made they think MIGHT save their kids? I'm impressed with the Muedders the same way I'm impressed with so many, many, many of these #MollsyKids families who fight, fight, fight tooth and nail.
Past posts on Finn:
Past post on Easton:
**Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.