Finn Muedder is a lot like other 3-year-olds. He loves applesauce and reading his favorite book before bed. He plays with Hot Wheels and he’s learning to swim.
What you can’t see is that the normally smiling Finn is likely going to die before he’s 10, unless we do something to help.
When I wrote those words, I flinched. I was afraid they might be too harsh for his mom to read but it’s a truth she lives with every day. There is no time to sugar-coat the reality of the situation.
So let me just give it to you straight.
Finn is one of an estimated 500 boys with Hunter Syndrome in the United States. There is no cure for the progressively debilitating rare genetic disease. Occurring almost exclusively in males, their bodies do not make an enzyme that takes care of cellular waste.
The only FDA treatment available is enzyme replacement therapy, which only stabilizes the physical symptoms but does nothing to prevent cognitive regression. These boys gradually lose the ability to talk, walk and eat.
Right now it’s the only thing Finn’s mom, Allison, can do so she takes him for the weekly infusions.
“To see your kid go through that for six or seven hours every week is hard,” she says.
Hard for Finn, too. He cries, “No creamy,” when it’s time to apply the numbing ointment intended to make the needle poke less painful. He knows what’s coming.
Gene therapy is a revolutionary approach to curing the disease both in mind and body. It has already shown positive results in other forms of metabolic disorders. The treatment delivers a normal copy of the defective gene one time triggering the body to naturally produce the missing enzyme. The only obstacle now is funding the clinical trial for Hunter’s Syndrome.
Since drug companies typically target funding for more common diseases, it’s up to the families dealing with the disease to find the money to pay for it.
“We just feel like the clock is ticking,” says Muedder.
The Muedders have joined with other families in Project Alive to raise money for the trials. So far the Go Fund Me campaign has raised $530,000 of the approximately $2.5 million needed by February to stay on schedule.
“Finn is at the perfect place and time to get this treatment,” Muedder says. Most signs of regression begin by 5 years old.
For Muedder, it’s a fight that tests her faith every day. She is thankful to have her church family at New Charlotte Church in Matthews to lean on.
“We never feel like we’re doing this alone,” she says. “People have been bringing us food. We’ve got people watching our kids for free while I go to the hospital and doctor appointments. People are stepping in financially and with prayer support.”
But Finn and the rest of the boys, including a handful in North Carolina, have a long way to go.
“The research part of this is done. We’re actually ready to take the research and save these boys.”
To see more of Finn’s story watch this video .
Photo Credit:Allison Muedder