Beck’s
Story
Meet Beck!
Beck was diagnosed with Duchenne Muscular Dystrophy when he was 5 years old. He hit all of his milestones on time and never gave us any indication that anything was wrong until the age of 4. During a family trip to Gatlinburg in 2015, He had a random fall and said “his legs just stopped working” We had a long day of walking and didn’t think much into it during our trip.
A few weeks later I remembered that he had been complaining with leg pains (especially at night) We had dismissed them as growing pains. We decided to make an appointment with his pediatrician just to make sure everything was okay with the little guy. Our pediatrician had him sit on the floor and stand up. She noticed him using the “gowers sign”
(The child assumes the hands-and-knees position and then climbs to stand by “walking” his hands progressively up his shins, knees and thighs. This maneuver known as Gowers sign, has been associated almost exclusively with Duchenne Muscular Dystrophy).
She had me take him to a local lab for blood draw. We ALMOST skipped that appointment because he hated needles like any child and he was so mad that we even took him in. The next day she called me with the results, she said “his CK levels were high” Meaning he had a form of muscular dystrophy. This was on a Friday. I can never forget her telling me not to Google it, but we needed to get him in with a neurologist ASAP. A month later, it was confirmed that Beck indeed had Duchenne Muscular Dystrophy.
Since his diagnosis, it has become our therapy to advocate awareness about this terrible disease. Duchenne typically only affects boys. Beck is our only boy. He just turned 11 in 2021. Our promise is to give him the best life possible and to help others through our journey.
Beck is currently participating in a clinical trial. He started at the age of 7. He has a weekly infusions. He’s had multiple surgeries, two port placements and many assessments to monitor his progression. His motto is. “I am doing this every week so no other kid has to go through what I go through everyday”
Gallery
Get in Touch
Contact Us
Our Mission
We’ve learned in the last 6 years that this world is not built for accessibility. Families like ours should not have to go without just because this is the life we live.
Reach Us
Gainesville Ga 30507
EIN-86-3983524