Journey with Duchenne 

By JeanAnn Bryan 

We are parents fighting to save our sons, Sawyer (14) and Wesley (12), who both live with Duchenne Muscular Dystrophy, a rare, progressive, and fatal genetic disease with no cure. Duchenne slowly takes away a child’s ability to walk, move and eventually breathe as heart and lung function deteriorate. 

For six years, our family has lived with this reality. But we have never faced it alone. Our family, friends, community and countless supporters have stood beside us, carried us through difficult momentsand given us hope when we needed it most. We will never be able to fully express what that support has meant to our family. 

What Life Looks Like Today 

From the outside, Sawyer and Wesley may look like two healthy boys who simply move a little slower. The reality is much different. Duchenne causes irreversible muscle damage every day. 

Over the past year, Sawyer has declined significantly. He struggles to stand and walk and now uses a scooter part-time. His bones have weakened, requiring regular infusions, and his heart is showing early signs of deterioration. Wesley isn’t far behind. Both boys battle daily fatigue that makes even simple activities exhausting. 

We watch them lose abilities other children take for granted. Sawyer’s bike still sits in our garage, though he hasn’t ridden it in more than three years. Wesley loves soccer and dreams of running the field, while we know a wheelchair will likely become part of his future. These are heartbreaking reminders that with Duchenne, time is muscle, and time matters. 

Our Full-Time Fight 

We do everything possible to slow the disease. Sawyer and Wesley see more than 30 doctors and specialists through UMass Medical Center and Sanford Health. They take more than 20 medications and supplements daily and undergo stretching, physical therapy, aquatic therapy and counseling. We continually research new treatments, determined to pursue every opportunity that could preserve their strength and independence. 

Our Hope: Cure Rare Disease 

Duchenne is caused by a genetic mutation that prevents the body from producing dystrophin, a protein essential to muscle strength and repair. Our boys share an identical, ultra-rare duplication mutation requiring a highly customized approach. 

Since 2020, we have partnered with Cure Rare Disease (CRD), a nonprofit developing CRISPR-based gene therapies for rare neuromuscular diseases. CRD has been developing a therapy specifically for Sawyer and Wesley, designed around their unique mutation. It represents our greatest hope of stopping this disease before Duchenne takes more from them. 

What You Have Made Possible 

Since their diagnosis, our supporters have done something extraordinary. Through approximately 20 fundraisers, personal investment and an incredible outpouring of generosity, more than $1 million has been raised to help move this treatment from an idea toward reality. 

We cannot say thank you enough. Every donation, fundraiser, prayer, shared post, introduction, conversation and act of kindness has helped carry our family forward. You have given us more than financial support; you have given us hope. 

But we have not reached the finish line. The total cost to manufacture and administer the customized therapy is approximately $2.2 million for both boys, and the urgency grows as their muscles continue to decline. 

A Fight Bigger Than Our Boys 

Rare diseases often lack the commercial incentives that drive traditional drug development, leaving families and nonprofit researchers to help push promising science forward. Success for Sawyer and Wesley could also contribute knowledge that helps advance individualized genetic medicine for other families facing rare diseases. 

The science is moving forward. Our boys are waiting. And Duchenne is not waiting. 

To everyone who has stood beside us: thank you. You have already made what once seemed impossible feel possible. We are asking you to continue this journey with us, to help us finish what together we started. 

For Sawyer. For Wesley. For every family still waiting, hoping and praying for a chance.