About Decker's Blueprint
Decker’s Blueprint is a nonprofit organization that was created to honor Decker, a young boy diagnosed with Duchenne Muscular Dystrophy. Decker’s passion for building and designing new homes, just like his father, a home builder, serves as the foundation of our organization. Despite the challenges posed by his condition, Decker embodies the spirit of a fighter, never giving up and always pushing forward. Your support will go towards funding research to find a cure for Decker and other children like him who have nonsense mutations and rare exons of Duchenne Muscular Dystrophy.
OUR STORY
Decker was diagnosed with Duchenne Muscular Dystrophy in January 2024. Like many other parents, after learning a similar diagnosis, we were devastated, brought to our knees, and unable to comprehend. He showed few symptoms initially, which were mild; but after a simple blood test followed by genetic testing, our world was shattered. We went from having a perfectly healthy young boy with large calves and stocky build – to having a child with an incurable, progressive muscle disease. Our planned family future with dreams of sports, traveling, graduations, and weddings was instantly erased and replaced with... emptiness and the unknown.
Meet the Team
Dan Murphy
Executive Director
Rob Murphy
Director of Business Development
Lauren Murphy
Director of Patient Advocacy
OUR MISSION
Decker's Blueprint is dedicated to raising awareness and funds for Duchenne Muscular Dystrophy (DMD) specifically around nonsense mutations and rare exons, with the ultimate goal of finding a cure for this debilitating disease.
Raise Awareness
Educate the public about Duchenne Muscular Dystrophy.
Fundraise
Generate financial support for cutting-edge research and support programs.
Inspire Hope
Show that with resilience and community support, anything is possible.
Build A Future
Provide resources to help children with DMD achieve their dreams.
WHAT IS DUCHENNE
MUSCULAR DYSTROPHY?
Duchenne Muscular Dystrophy (DMD) primarily affects young males, who lack the ability to make dystrophin, a protein necessary for muscle strength and function. It affects 1 out of every 5,000 children, approximately 15,000 children in the US. Typical diagnosis occurs during early childhood. Most boys are wheelchair bound before their teen years, and progressively lose upper body strength and function of their arms. Ultimately, Duchenne boys lose the battle in their early 20’s after deterioration of their heart and lung muscles.
THE NUTS
& BOLTS
Decker has a nonsense mutation in the gene that provides instructions for the body to make dystrophin. Only 15% of DMD patients have a nonsense mutation – making him very special. Although the landscape of DMD treatments has grown tremendously in recent years, there are still a lot of boys excluded from these treatments. Decker’s Blueprint was established to raise awareness and funds for rare cases of Duchenne Muscular Dystrophy.
Currently, Decker takes daily steroids to combat inflammation as well as a trial drug to slow progression of the disease. He has biannual appointments with specialists in Philadelphia, PA and Columbus, OH, monthly appointments at Johns Hopkin’s in Baltimore, MD, and weekly therapy sessions for PT and swimming. He is supported by his younger sister, loving parents, grandparents, aunts, uncles, cousins, businesses, extended family and friends. He knows he has “special muscles”, but he also knows how hard his family is working to help him.
Supporting Decker’s Blueprint is not only helping him, but other young boys who were cheated out of a normal childhood and dealt a rare diagnosis.
Constructing Decker’s Blueprint
From a young age, Decker took a special interest in building Legos. His father, Dan, is a homebuilder and Decker soon started following in his footsteps. After constructing several custom homes with Legos, Decker moved onto drawing blueprints of buildings and even designed the house he would like to build with his dad someday, at the age of 6. Decker also built a replica of CHOP (Children’s Hospital of Philadelphia) out of Legos, the evening after his first appointment. Similar to Decker’s long-term plan of being a homebuilder with his dad, Decker’s Blueprint was started to find a long term treatment or cure to Duchenne Muscular Dystrophy.
