Good news about Hunter syndrome trial, and Charlotte 7yo, Finn Muedder
CHARLOTTE, N.C. (WBTV) - “We can’t wait to *finally* share the following,” wrote Allison Muedder, the dedicated, upbeat, and wildly-on-top-of-things Charlotte mother to Finn Muedder.
“The trial for Finn’s rare genetic disorder is moving forward. We legally haven’t been allowed to say anything but NOW we CAN!”
To those who don’t recognize Finn Muedder, this now 7-year-old is a longtime one of our #MollysKids. We were Facebook live in his living room in 2017 (here >> http://tinyurl.com/FinnMollyFBLive) when Finn, his mom, dad, and two siblings were just starting out on their loooooooong journey with their son’s unique illness. Finn is one of about 500 boys in the United States who lives with Hunter syndrome. His family—as we talked about in that Facebook live as they were just kicking off fundraising—worked tirelessly to raise $2.5-million for a gene therapy trial.
Hunter syndrome is a rare disorder in which the body does not properly digest sugar molecules in the body. When they build up in organs and tissues over time, they cause physical and mental damage. This disorder almost always occurs in boys. As the little boy gets older, their body regresses developmentally. As it stands now, the syndrome is terminal.
“When he was first diagnosed 4-and-a-half years ago, we dreaded birthdays,” Allison said. “They were a reminder of the passing of time and the impending loss of skills that comes with Hunter syndrome. But we’re happy to report that Finn is doing far better than we could’ve imagined when first given this prognosis.”
Allison says Finn is full of energy. He continues to endure his (many) medical appointments and treatments like a champ.
That’s the personality update: Finn is happy and doing well.
There are two big medical updates to also relay, and these are why Allison ultimately wrote. Stick with the explanation of them. Both are really exciting to a mom who watches her boy grow, knowing what she knows.
1) The $2.5-million Finn’s family raised through Project Alive and the collective Hunter syndrome community recently got transferred… to… UNC-Chapel Hill. It was supposed to be in Ohio. It’ll start, Allison says, later this year. All those lemonade stands, school fundraisers, and Facebook donations have added up. “We are really hopeful it will save lives,” she said.
2) Separately, and luckily, Finn is also participating in a second clinical trial, this one also at UNC-Chapel Hill. This one is an experimental treatment that requires weekly infusions of a drug designed to (hopefully) stop cognitive decline in boys who live with this illness. Allison says Finn is responding well to the trial. (“He’s doing great!” she wrote.) She added that it’s still not a cure, but is buying the family time and they are grateful.
Few more pictures of this joyful child below in comments.
Hellllllloooooooooo to you, Allison, and your husband, Jon. It’s great to hear from you both and please keep us updated.
Past #MollysKids posts on Finn:
- June 5th, 2018 >> http://tinyurl.com/Finn6MKs
- May 15th, 2018 >> http://tinyurl.com/Finn5MKs
- Feb 12, 2018 >> http://tinyurl.com/Finn4MKs
- Jan 1st, 2018 >> http://tinyurl.com/FinnRyanKalilMKs
- July 3rd, 2017 >> http://tinyurl.com/FinnMollyFBLive
- May 1st, 2017 >> http://tinyurl.com/FinnMKs
Copyright 2021 WBTV. All rights reserved.