In the summer of 2021, Mason (3.5 years old) and Dawson (6 months old) were both diagnosed with Duchenne Muscular Dystrophy (DMD) — a rare, progressive genetic disorder characterized by severe muscle degeneration. In individuals with DMD, the body lacks a crucial protein called dystrophin, which is essential for muscle repair and function. Without dystrophin, muscles gradually break down at an accelerated rate.
The natural progression of Duchenne typically begins around the age of 7, when gross motor skills decline, and children may require increasing assistance to move around. By the ages of 10 to 12, most individuals with DMD lose the ability to walk and require the use of a wheelchair. Because every muscle in the body is affected — including those involved in breathing and heart function — the disease ultimately impacts all areas of physical ability. Currently, the average life expectancy for individuals with DMD extends into their 30s, though advancements in care and research continue to offer hope for improved outcomes.
There is hope on the horizon for Duchenne Muscular Dystrophy patients. Recent advancements in gene therapy offer promising potential, and we are optimistic that these innovations will allow Mason and Dawson to maintain their mobility into adulthood. Currently, both boys are following a steroid treatment regimen as part of their care plan.
In the summer of 2022, Mason (4.5 years old) participated in one of the first gene therapy clinical trials. His trial was Phase 3, which later became a fast-tracked, FDA-approved therapy for other boys with Duchenne. Before a boy can receive this medication, extensive lab work and testing are required, and not all boys are eligible. While this therapy is not a cure, it represents a significant step forward in the fight against Duchenne.
In the summer of 2025, Dawson (4 years old) received a Phase 1 gene therapy trial. This required our family to temporarily relocate to Arkansas—eight hours away from home—for three months so he could participate. As part of the trial, Dawson underwent two muscle biopsies. This was especially difficult for us, as each biopsy involved removing a small piece of muscle from both of his thighs—muscle that, because of Duchenne, is already breaking down far too quickly. While it was not an easy decision, we chose to move forward with hope that this opportunity could make a difference for Dawson’s future.
Currently, Mason (8) and Dawson (5) are still walking and doing amazing for their ages. Mason is receiving weekly IV infusions aimed at slowing the progression of the disease, while Dawson is unable to continue these infusions until he progresses further in his gene therapy trial. Both boys take chronic steroids to help manage inflammation, and Mason is also on an additional approved therapy that is helping restore some of the muscle he is losing daily. Dawson is not yet eligible for this medication.
The future is full of possibilities, and we remain hopeful that Duchenne Muscular Dystrophy will one day be eradicated in our boys’ lifetime.
