OUR
STORY
Late in the afternoon of December 30, 2011, as our young family was getting ready for a Christmas celebration, my husband Chris and I learned that our sweet four-year-old Henry had Duchenne Muscular Dystrophy. As our happy children went to the holiday party, Chris and I wept at the prognosis we found online. I didn’t often see Chris cry but this would not be the last time. As we digested this devastating diagnosis, Chris vowed that we would fight. I nodded but wondered if he had read the same heartbreaking information that I had. A diagnosis with no treatments and a life expectancy of fourteen felt difficult to combat.
At the time, this bleak night marked the before and after of our family’s life. My children cannot remember a time before Duchenne. In their world, Henry has always done daily stretches, worn night splints, and used a wheelchair or scooter. Lucy has watched as her parents and brother leave for clinic visits and conferences. As the years pass, Duchenne becomes a more painful and difficult companion to accommodate. My happy boy grows sadder and angrier as his friends become bigger, stronger, and faster... leaving him to wonder where he fits. Lucy wrestles with Duchenne in the way that only siblings with similar experiences can understand. Duchenne has cast its shadow over all of our lives.
Shadows only exist, though, because of the light. Since that winter day in 2011, we have done exactly what Chris declared we would do. We have battled Duchenne. We research, we advocate, and we seek out the best possible care for Henry. We have tried to pack all the experiences and joy of life into the short years we might have together. When Chris died unexpectedly, his children and I were left with more happy memories than we can count. Duchenne pushed us to live our lives on purpose and that is a gift. Chris would never have wanted us to continue without him. I miss my partner. Henry and Lucy miss their greatest advocate. We will continue to fight and continue to love because to do less is not an option. We are Team Diemler.