Who we are
When looking at our oldest son, Luke, who is only 8 years old, you will see a beautiful little innocent face. Every time his picture is taken he either makes a funny or adorable smile that always makes us laugh or hearts melt. However, you would never be able to tell that he is living with a rare-life threatening illness. In February 2013, our hearts became heavy and our world rocked when he was diagnosed with the most progressive muscle-deteriorating disease…Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy is a rare, genetic and terminal disease that effects skeletal muscle development including the heart and lungs. Children with DMD cannot produce a natural protein called dystrophin, which is necessary for muscle strength and function. As a result, muscles in the body deteriorate leaving kids in wheelchairs in their early teens and historically losing their fight in their mid to late 20s (many before the age of 14) due to respiratory and pulmonary failure. There is currently NO FDA approved treatments, but there is hope due to current medical breakthrough therapies that are on the cusp of being tested. This disease is way too awful to ignore!!
Despite these statistics Luke is a happy, meticulous and incredibly sweet boy who loves playing with his friends, cousins and most importantly his best friends, John and Cole, his little brothers. On any typical day he is always mastering puzzles, painting abstract pictures, playing video games, crafting Mindcraft, swinging on the swing set and just trying to be a “normal child”. He loves swim lessons, karate and is always planning fun activities with friends. Luke is aware of his inabilities and tries his best to keep up with his peers but doesn’t allow his weakness to hold him back and is constantly saying “I can do that by myself”. Luke is still too young to know or comprehend the severity of his disease but we can only pray that “mind over matter” is evident within him and one day there will be a cure for duchenne. When that day comes it will be easier to explain to him the miracle to why he’s still able to walk in his late teens. That because of the perseverance of science and compassionate people it is possible.
