Our son, Grant, was almost 6 years old when he was diagnosed in January of 2017 with Duchenne Muscular Dystrophy. Our daughter Wrenna, and Grant’s best friend, was 4. To say that we were shocked or sad about the diagnosis is not an adequate description. We experienced an earthquake of fear and grief. Learning soon thereafter that I was the carrier of the disease caused even more aftershocks. Along with the anguish, however, came life-changing gifts. Immediately following our son’s diagnosis we attended a CureDuchenne Cares event. There we found a supportive community sharing the best science, the best care, and most importantly, a philosophy for living with positivity and hope. Through CureDuchenne we have found our family. Our research and efforts combined with this support has helped us to seek out and provide the finest therapies, physicians and treatments for Grant. Knowing that we are doing our very best for our son and our family means we do not waste energy on regret. We give it our best effort and when we fail or struggle we try again, and again, and again. Incredible scientific progress is coming to fruition for Duchenne Muscular Dystrophy and this fuels our hope for a better disease trajectory for our son and his future. We have developed a deep appreciation for life and we cherish each day like life is precious, because we know that it is. We recognize the difficulty of this journey but the experience has made us better people and better parents, too. We were blessed with the miracle of two amazing kids and the joy they give us is irrefutable, and the love our family shares is abounding. These gifts have given us the strength to endure all that grief brings and to feel joy and gratitude for all of the blessings we have. Our family motto is “Don’t take life for GRANTed” and we strive every day to live up to it.
How to Identify and Manage Fat Embolism Syndrome (FES) in Fractures
REGENXBIO Announces Completion of Enrollment in Cohort 2 and Additional Positive Interim Data in AFFINITY DUCHENNE® Trial
Sarepta Therapeutics Announces Positive Data for Duchenne Muscular Dystrophy Amenable to Skipping Exon 51
CureDuchenne Welcomes Patricia Brown as Senior Director of Community Engagement
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