Henry was born November 9th, 2012 in Evanston. Everything went well and our two daughters, Grace and Claire, were excited to have a new baby at home to play with. It didn’t take long before we started to notice that there was something wrong. Feedings took substantially longer, it was hard to hold him under the armpits, and, in general, Henry just felt weak and limp. As the symptoms pointed with increasing clarity towards a muscle disease, we responded with denial. We weren’t ready to accept that something was wrong with our handsome little guy. We tried to convince ourselves that Henry was just doing things at his own pace. When the test results came back, however, we had to face reality. The diagnosis, Merosin Deficient Congenital Muscular Dystrophy, was completely foreign to us. With no family history of muscle disease, we were especially nervous and scared. We didn’t know what to expect for our little man.
From those very early, terrifying days, our family has been absolutely blessed by the support we’ve received. The love of our family and friends has buoyed us, and we couldn’t ask for a better care team. Henry’s doctors at Lurie’s and therapists at Pathways are simply the best. Our whole team of family, friends, doctors and therapists couldn’t provide Henry with the support he needs or the hope he deserves without the incredible work being done by the Muscular Dystrophy Association. The MDA has made possible the ground-breaking research that has empowered us with information about this mystifying disease, has helped determine best practices for Henry’s therapeutic care, and has funded the research that gives doctors the tools they need in their fight against muscle disease. Their work gives us hope that someday we’ll have a cure for the numerous, debilitating muscle diseases that impact the lives of so many. All of this essential research and, more importantly, the hope it provides, simply wouldn’t be possible without the tremendous generosity, care, and dedication of people like you. We will never be able to adequately thank you for what your hard work is doing for families like ours. What you are doing is a true act of love.
From the bottom of our hearts, thank you, we are forever grateful.
As you run in Henry's Thanksgiving Day Hustle 5K please know that Henry James, our family, and countless others around the world are with you in spirit, matching you stride for stride towards the goals we share. Muscle disease takes so much from those it affects. We hope you know how much it means to all of us that you are running, in so many ways, for those that can’t. Your effort is a blessing and fills us with hope and love.