Please support us at this year's Philadelphia Marathon as we race to raise awareness of Dylan Kunkel's ongoing battle with a rare neurological disease called SMARD, or spinal muscular atrophy with respiratory distress. SMARD is a life-threatening disorder caused by the degeneration of the motor neurons responsible for gross muscle movement. It shares many similarities to other muscular dystrophies but is especially debilitating as it severely affects respiratory function.
Dylan was born in March 2012 but was hospitalized at just two months of age when it became obvious that he was having trouble breathing on his own. He spent two months in a pediatric intensive care unit (PICU) attached to breathing machines with a large contingency of doctors searching for answers. Dylan eventually received a tracheotomy which allowed him to return home with the assistance of a ventilator. A full year after his initial hospitalization, a genetic test confirmed a diagnosis of SMARD.
On our race day, Dylan will be 20 months old. He has already beaten long odds as, sadly, many babies with SMARD never see their first birthday. Every day is full of challenges for Dylan and his family, but they have persevered. While his physical limitations are obvious, the disorder does not affect his cognitive or social abilities. His smile and laugh are contagious and we are racing in hopes that his laughter will be with us for many years to come.
While Dylan's future prognosis is unclear, thanks to research taking place at The Jackson Laboratory, there is hope for Dylan and others who are affected by this debilitating disorder. Please support Dylan, us, and SMARD research at The Jackson Laboratory this November 17!