Imagine being told your child would never live to see his teen years. That’s the reality for a local family, Jon and Allison Muedder. Their son, Finn, has Hunter Syndrome (MPS II). At age three, he spends six hours every Wednesday at the hospital getting treatments that will prolong his life. The Muedders are racing the clock to keep him alive long enough to find a cure.
Hunter Syndrome is a rare genetic disease. It affects less than 500 boys in the United States. Children with Hunter Syndrome lack an enzyme that is used to break down cellular waste. This leads to progressive damage to their bodies. The symptoms often start showing up by age two or three years of age and get progressively worse. Eventually, the children lose the ability to walk, talk, eat and live.
However, doctors believe they may have a cure. According to the Project Alive Website, “In 2013, after it had been performed on other forms of MPS with positive results, a group of Hunter Syndrome families initiated a partnership with researchers at Nationwide Children’s Hospital in Columbus, Ohio to begin gene therapy research in Hunter Syndrome / MPS II. Now, the researchers are in the final stages of developing the first gene therapy clinical trial for boys with Hunter Syndrome. The only obstacle is the substantial funding required for such a trial. If the necessary funds are raised, the trial could begin as early as late 2017 or early 2018.”
Gene therapy involves delivering a normal copy of the defective gene into the body. Under ideal circumstances, that gene will then start producing the missing enzyme. According to Project Alive, “Currently, the only FDA-approved treatment on the market, enzyme replacement therapy (ERT), is able to stabilize many of the physical symptoms of Hunter Syndrome. However, as it cannot cross the blood-brain barrier, it is unable to prevent cognitive regression, meaning the child will continue to decline to an infantile state.” This means gene therapy is the only real chance for a cure.
On Saturday, October 14, Mario’s Italian Restaurant and John’s Place will join Team Finn in the fight against Hunter Syndrome. A percentage of the day’s revenue will be donated to Project Alive. Also, Mario’s will be hosting a silent auction. Their flyer says the auction will be “packed with items, experiences, outings and more to help raise additional funds, all of which will go to Project Alive.” Mario’s will also have entertainment for the kids.
For those unable to attend the event on Oct. 14, checks can be made out to Project Alive with “Mario’s for Team Finn” in the memo section. Checks can be dropped off anytime at the restaurant or mailed to PO Box 384; Thompson’s Station, TN 37179. Donations can also be made online at www.projectalive.org/donate.
Items are still being accepted for the silent auction and can be contributed by texting or calling Connie Fisichello McCollister at 704-517-5581. Join the Team Finn:: Hunter Syndrome Facebook group to get updates directly from Jon and Allison and stay in touch with Finn’s progress.