The Leclaire boys share a cheerfully cluttered bedroom in their family’s modest ranch located in a rural village about 20 miles north of Brattleboro. A pair of twin beds line up against one wall and sky-blue curtains printed with planets frame the windows. Pet turtles, crabs and lizards inhabit a row of cages and stuffed animals and art projects fill corners.
The brothers have the same thatch of copper-brown hair, deep green eyes, freckled fair skin and they also share something else. Both Austin, 14, and Max, 11, have a rare genetic disease called Duchenne Muscular Dystrophy (DMD), a fatal condition characterized by progressive muscle degeneration and weakness due to lack of dystrophin, a protein that helps preserve muscle cells. There is no cure for DMD and standard treatments like steroids, heart medication and surgery only manage the symptoms. Typically, people with DMD die by their mid-20s.
There is, however, a new drug in trial that shows promise in stabilizing the disease and possibly even allowing some health improvement. The catch is that this is something the Leclaire brothers cannot share; only Max qualified for the trial, and though he has experienced significant health gains during the past 18 months, his older brother can only look on from his wheelchair as his physical condition continues to deteriorate.