We’re Ryan and Jessica Hubbard, and this is an update on how we’re living deeply. Our 5-year-old son Deacon is battling Duchenne muscular dystrophy, a fatal muscle-wasting disease for which there’s currently no cure. Boys with Duchenne typically live into their 20s and are in a wheelchair by the time they’re 9 or 10.
Jessica: “For about the past year, we’ve been in a race against time. Deacon’s doing well, but we’ve seen increasing fatigue and some physical decline in the past few months. He definitely can’t do stairs -we carry him up- and climbing into the car is not something he can do anymore, either. To help lengthen and improve Deacon’s life, we needed to get him into a new gene therapy before his sixth birthday, on August 14. Starting in December, we did antibody testing, but our insurance wasn’t favorable for gene therapy, so we switched to Ryan’s insurance.”
Ryan: “It seemed promising, but then we hit a snag. At $3.2 million for the medication, the cost was just too much for my employer’s self-funded plan to cover.”
Jessica: “Eventually, we dropped Deacon from Ryan’s insurance and bought a marketplace insurance policy from the state of Tennessee.”
Ryan: “It’s been a rollercoaster. Every time we thought we were set, something came up. But after months of back and forth, we finally got approval in June! Even after that, the insurance and hospital were in contract negotiations, delaying things further.”
Jessica: “They were stuck on the wording of the contract. It was stressful, but we trusted God’s timing.”
Ryan: “Now, the day’s finally here: Deacon’s dosing is scheduled for today in Columbus, Ohio. It’s a one-dose treatment, but Jessica and Deacon will stay at the hospital for four weeks for close monitoring of Deacon’s liver enzymes and any potential side effects.”
Jessica: “After that, they do weekly testing for twelve weeks. If all goes well, we can come back to Knoxville and continue testing here. But we’ll be separated for a month when Ryan and our daughter, Emily, come back to Knoxville for Emily to start fifth grade.”
Jessica: “Deacon’s treatment isn’t a cure for Duchenne, but it could prolong his ability to walk and keep his heart healthy longer. It’s really about quality of life and buying time for new treatments to come. Seeing other kids who’ve had this treatment run and play gives us hope for Deacon.”
Ryan: “Duchenne literally affects every muscle in the body, including the heart. The new medicine will help his body produce dystrophin, protecting those muscles and opening a window for new advancements. It’ll also give him a better chance at a normal childhood. He can just be a boy, playing and running with his friends without feeling different.”
Jessica: “His friends know his muscles are different, but they don’t understand why he can’t run as fast. This treatment will help him keep up and enjoy being a kid. That’s all we’ve ever wanted for him.”
Ryan: “Our hope for Deacon is that he enjoys life to the fullest, with as little pain as possible. We want him to have the chance to grow and thrive, to experience all the joys of childhood without the burden of his condition.”
Jessica: “And again, we’re hopeful this treatment will buy time. Maybe in a few years, there will be new options, or even a cure. But for now, we’re celebrating every victory, and Deacon’s ability to receive the treatment is a big one. (By the way, around the time of Deacon’s approval, the FDA removed the requirement that boys be younger than 6 to receive this treatment. We’re thankful for the hope that gives other families!)”
Ryan: “We’ve received so much good news in the past couple weeks that we don’t know what to do with ourselves. After months of waiting and wondering, we finally got the hospital contract signed.”
Jessica: “I remember waking up one night, restless and stressed, praying, ‘God, is this the right thing? I’m putting it in your hands.’”
Ryan: “We’d even questioned if maybe Deacon wasn’t supposed to have the medicine, but then everything fell into place.”
Jessica: “Eight hours later, the hospital called to say the contract was signed. What encouragement to trust His timing!”
Ryan: “God is always listening to our prayers and has a plan, even if we don’t understand it.”
Jessica: “Through all this, my faith has grown. When I was trying to figure things out on my own, everything was really hard. But the more we’ve entrusted it all to God in prayer, the more He’s shown us He’s in control and we can trust Him.”
Ryan: “And that’s brought us closer to Him. He’s always there, even in the hardest times, lifting us up when we need it most. He’s taught us patience, too, and He’s brought our family closer together. We’ve learned to lean on each other and our faith.”
Jessica: “We’ve also learned God’s timing is perfect, even when we can’t see it. Looking back, we see His plan in every step. But it’s not always easy to see in the moment.”
Ryan: “Emily’s been deeply affected. She worries a lot. She even cried at times, thinking Deacon might not get the medicine. One night, Deacon even prayed, ‘Dear God, can I please have my medicine?’ It broke us.”
Jessica: “Through it all, we’ve learned God is good, even in the waiting, when His plan isn’t clear to us. He’s brought us through so much, and we know He’ll continue to guide us. We’re ready to face whatever comes next, knowing we’re not alone.”
Ryan: “We’re grateful for the support of our CSPC family. Your prayers and encouragement have meant the world to us. Please keep Deacon and our family in your prayers today. We’re excited for what the future holds and trusting God to lead us every step of the way.”