Tea community rallies to save two young brothers battling rare disease

For Beau and JeanAnn Bryan, the fight to save their sons has become a race against time — and they’re calling on their community to help. The Tea family needs to raise $800,000 to move forward with a lifesaving treatment for their boys, Sawyer and Wesley.

Sawyer, 13, and Wesley, 11, are the sons of Beau and JeanAnn Bryan. The Bryan’s have called Tea home for the last 17 years. Sawyer and Wesley 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 even breathe. Most boys lose their ability to walk in their early teens, and as the disease advances, their heart and lung functions weaken, and by their twenties, they often lose their use of arms and become completely dependent on others. Many don’t live beyond their twenties, it’s a heartbreaking future no child should face, and no parent is ever ready for,” said Beau Bryan.

Duchenne Muscular Dystrophy is caused by a genetic mutation blocking the production of dystrophin, a protein vital for repairing and strengthening muscles. Without the dystrophin, muscles break down over time. 

“With over 3,000 possible mutation sites in the dystrophin gene, there is no one-size-fits-all solution. Our boys share an identical, ultra rare duplication mutation, making their case complex and urgently in need of a customized treatment,” Bryan said.

Each day Sawyer and Wesley wake up, they face doing irreversible damage to their bodies. 

“From the outside, it may seem like we have two healthy boys who just move a little slower, but the truth is far more painful. Over the past year, Sawyer has declined significantly. He struggles to stand and walk, using a scooter part-time. His bones have weakened to the point he now requires regular transfusions, and his heart is showing early signs of deterioration,” he said.

Beau notes that Wesley isn’t far behind as both boys battle daily fatigue which can make even the simplest tasks exhausting for them. 

“Duchene is quietly, relentlessly breaking their bodies down. It’s utterly devastating to watch their decline,” Bryan continued.

JeanAnn and Beau are facing a reality that Duchenne Muscular Dystrophy is robbing their sons of their futures. 

“It’s utterly devastating to watch their decline. While other families see their kids grow stronger, running bases or kicking a soccer ball, we watch ours do things for their very last time. Sawyer’s bike still sits in the garage, a quiet reminder of what he loved most. He hasn’t ridden it in over two years, and deep down, we know his last ride is behind him. Wesley watches soccer on TV, dreaming of running the field, but the reality is, he’ll likely be in a wheelchair before high school ends,” he said. 

The family has yet to back down to Duchenne Muscular Dystrophy and do everything within their power to slow the progression. 

“Sawyer and Wesley see over 30 doctors and specialists with frequent evaluations to update their care. We actively research new developments and treatments, determined to find every possible way to help,” Bryan said.

Currently, both boys are on over 20 medications and supplements per day, do stretching and physical therapy to maintain mobility, weekly aquatic therapy for low-impact exercise, and have regular counseling to cope with the cruel diagnosis. 

“The boys rely on ankle braces, scooters, and high-protein balanced diets to support muscle strength. We are doing all we can, but it’s not enough without treatment,” he said. 

To find a customized treatment for their sons condition, the Bryan’s partnered with Cure Rare Disease (CRD), a nonprofit pioneering CRISPR-based gene therapy for rare neuromuscular conditions like Duchenne Muscular Dystrophy. 

“Since 2020, CRD has been developing a treatment specifically for Sawyer and Wesley using advanced gene-editing technology tailored to their unique mutation. This therapy is their only chance to stop the disease in its tracks and give them more time, and more life,” Bryan said.

For the past five years the Bryan family has been fundraising to raise $2.2 million to begin the manufacturing of the treatment. 

“Since their diagnosis five years ago, we have poured our hearts into this fight. Through 18 fundraisers, and with a significant personal investment, we’ve raised over $250,000 to support the research and development of a treatment for our boys. The total cost to produce and administer the treatment is $2.2 million, $800,000 of which must be raised by October to be manufactured and stay on track for dosing in 2026,” he said.

The research team believes in their product and are placing hope the money will be raised in time. 

“The researched team delivered incredible news recently that the lab results are promising, and manufacturing could begin as early as late 2025. Sawyer and Wesley are among a small group leading the way, and among the first to receive this life-saving therapy,” Bryan said.

The Bryan’s are asking for the community they call home to stand with them in fighting for their boys’ lives. 

“Now we have to do what any parent would do, fight with everything we have to save our children, and we humbly reach out for your help in joining us in this fight, not only for Sawyer and Wesley, but for the countless others who will follow,” he said. 

Community members are invited to participate in a 5k walk/run Saturday September 27 in Tea and Burke. A Bryan Boys Benefit: Western Casino Night & Auction will be held at Icon Event Hall in Sioux Falls on October 11. Registration and donations to the Bryan family can be made through the family website, www.bryanboys.org. All events are family friendly and all donations will go directly towards manufacturing Sawyer and Wesley’s treatment.