That sparky little dude between his mom and I, is my son Liam. Just before Christmas 2021, we learned that he had Duchenne muscular dystrophy (DMD), a rare degenerative muscle disease. At the time of his diagnosis, we were told to expect that with his specific gene mutation his muscle development would plateau around age 7, he would be in a wheelchair by his teens, and that he could hopefully reach age 25. There was no treatment for Duchenne muscular dystrophy. 

That changed however this past June. The FDA approved Elevidys, a gene therapy and the first treatment for Duchenne. Elevidys would be a one time infusion, which would fill in some of the missing pieces of his dystrophin gene, making his muscles function more fully. The therapy was approved for boys ages 4 and 5. Liam turned 4 just a few weeks after the FDA approval. It felt like it was meant to be. 

However our health insurance provider, HealthPartners, has had a different idea. They continue to deny Liam the chance for this life altering treatment. Each of our appeals have been countered with outdated information on current Duchenne treatments and misconstrued facts about his eligibility for the treatment. They falsely believe that because he has a more rare dystrophin gene mutation, Elevidys is not a viable treatment. Not only is this untrue but they are essentially punishing Liam for having this rarer type of Duchenne and thus are shortening his life. 

When Liam was born, it was just 2 years after my cancer treatments, so he felt like a little miracle. We had no idea. With everything now seemingly stacked against him he just troops on. And so we follow his lead and try to give him the best life we can. We moved to a new house that can grow with him as his mobility becomes more limited. He’s in weekly speech and physical therapy. We’ve adjusted our lives considerably, which includes quitting my job to become a stay-at-home dad and caregiver (daycare was too tiring for him). As much as possible his mom and I have tried to give him the tools to fight against this terrible disease. But we can’t do this fight alone -

We need your help. 

Please help in Liam’s battle and sign our petition for Healthpartners to approve this life changing gene therapy.