CLEMMONS, NC (WBTV) - "Our goal is to save our little boy," mom Rebecca Walker said. "That's it. That's what we're trying to do."
Easton Walker, from Clemmons, NC in Forsyth County, lives with Hunter Syndrome-MPS II.
If "Hunter Syndrome" sounds familiar to you, it might be because one of our #MollysKids in Charlotte, Finn Muedder, lives with it as well.
We've talked a lot about Finn and his incredible family fighting around the clock. Rebecca says they know Finn because this syndrome is so rare, and so devastating, all families going through it across the nation try to help each other.
"There's no cure," Rebecca said. "Treatment, yes. But even then, treatment won't reach Easton's brain and there will be neurological decline."
What is Hunter Syndrome-MPS II? There's no super easy way to describe this metabolic disorder. It's almost only ever seen in boys and is caused by them not having enough of one enzyme needed to break down certain complex molecules. Those molecules then build up and eventually affect every organ in the body, causing heart failure and respiratory problem.
The lifespan is only 10-15 years.
"We need a cure," Rebecca said. "All the parents of these boys need a cure."
Finn Muedder's family has been working, furiously, on finding one. They've been raising TONS of money to fund a trial drug. The trial was FDA-approved, which means if enough is raised, the test can go forward.
They call the campaign "Project Alive." Easton's family has also recently gotten involved.
"Easton has a really complicated version," Rebecca said. "He's a medically complex child who lived in NICU when he first born for a month.
Two weeks after being home he was rushed back to the hospital. Everyone knew there was probably a bigger picture with his symptom list being a mile long, but nobody could really fit everything together. He kept having tests, we kept pushing for answers. Now we finally know."
Rebecca says once the official diagnosis came last November (they didn't know until he was 10-months old!), she went through all stages of loss within 24-48 hours, despite knowing she hadn't yet lost anyone.
"It all made me realize the diagnosis didn't change who my son is," she said. "We just have to face this obstacle head-on. My son is still in front of me."
Easton has started weekly enzyme treatments. Rebecca says they're now on a strict plan.
"I know you follow Finn and his story, but there are so few of us fighting for Hunter Syndrome that it sometimes feels like we're all shouting loudly to a small audience," Rebecca said. "I'd love for people to meet my son, too. We're all in this together."
Yes, we are.
**Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham 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.