Tiffany and Wil Cook share their experience living and coping with the diagnosis of Duchenne Muscular Dystrophy (DMD). When Will was homeschooled he turned to video games and has made many friends around the world. Tiffany discusses her work as Family Resource Manager with CureDuchenne and the inaugural virtual gaming tournament hosted by CureDuchenne and PTC Therapeutics on October 10 to connect gamers and people living with DMD across the country.
As DMD is inherited from the patient’s mother in about two thirds of the cases, Wil’s mother, Tiffany Cook, learned she carried the gene and as a result was diagnosed with a condition called cardiomyopathy. She now takes the same heart medication as her son. While Wil found a community through gaming, Tiffany found a way to help others by joining CureDuchenne, a nonprofit that aims to connect families with children living with the condition to resources and support.
Since the age of four, Wil Cook seemed to always be sitting down while other kids his age were running around. Three years later, he received a life-altering answer: he was diagnosed with a devastating rare genetic disease called Duchenne Muscular Dystrophy (DMD). While Wil’s peers got stronger in middle school, Wil’s health rapidly started declining. Because of the quick progression of his disease, Wil was homeschooled at his house in Dallas, where he turned to video games to cope with loneliness and isolation. When gaming, Wil can connect with others without the fear of being perceived as “different.” Wil even had two fellow gamers he befriended online surprise him in Dallas for his 18th birthday. Today, Wil is 20 years old and continues to follow his passion for gaming.