Note: Brian Denger is a parent of 2 sons with Duchenne muscular dystrophy. Today we are honored to share his story, and blessed to know and love his family as a part of ours.
Patrick is seated next to me in the first row of a 737. We’re on a flight to Austin, Texas so he can attend a gaming convention.
While traveling is fairly mundane for most, it’s quite an undertaking for us; his willingness to endure the ‘inconveniences’ for this trip isn’t lost on me. Unless they watched us board, other passengers wouldn’t realize he has a disabling condition and is unable to walk.
Patrick has Duchenne muscular dystrophy (DMD). When he was diagnosed 20 years ago, I never expected we would be making this trip. In fact, the medical literature at that time raised doubts of his surviving into adulthood.
Patrick is 25 and able to travel. Streaming online several days weekly helped him build quite a network of friends and is the reason he will attend the convention. Despite the loss of most physical ability, Patrick is able to use a computer and phone and drive a van using hand controls. Patient care and survival have improved since his diagnosis, this is our story.
My wife Alice and I have 3 children, a daughter Rachel is an RN working in a nearby hospital and 2 sons, Matthew and Patrick. The boys were in elementary school when diagnosed with DMDin the late 1990s. It is a genetic condition and inherited 60% of the time. We were told our sons with DMD might not survive past high school age. It was nearly impossible to consider our they would eventually lose all physical ability and might not live into adulthood. We had no family history and were devastated in learning about the disorder. The first year after diagnosis left us in a state of shock and grieving for our sons and ourselves. Knowing our example influenced our children, we eventually pulled ourselves together and learned to cope.
I became the information junkie while Alice managed clinic appointments, my travel, and our health insurance. My interest led to being involved with Parent Project Muscular Dystrophy, attending their annual conferences and participating in a number of their programs including being an advisor of their patient registry and advocating for increasing federal spending for research.
These activities occasionally required travel; Alice stayed home to care for our children in order for me to participate. The more we learned about the condition, the more we realized the need for aggressive care. As our children got older, Matthew struggled with walking and climbing stairs. Patrick was stronger and learned to ride a scooter and pedal a bicycle. They did well in school and made friends with classmates. Alice and I encouraged them to join activities and told they would attend college.
Not satisfied with that prognosis or the state of medical care locally, we started traveling to centers with more experienced DMD specialists who were developing interdisciplinary programs. Our calendar filled with fall and spring clinic visits, locally and in Cincinnati and later in Baltimore. The progression of loss in ability continued, yet our sons’ quality of life was better. We learned about current clinical trials for DMD from the doctors at the larger clinics. Matthew and Patrick participated in trials studying whether existing drugs or newly developed treatments might be beneficial to patients.
Matthew more rapidly lost ability than Patrick. There can be much difference, even between siblings. He stopped walking by age 8 and needed spinal surgery at 13. Patrick is 2 years younger. He walked until 13 and retained much strength. After graduating high school, Patrick learned to drive a van with hand controls. My son finished high school with academic honors and both were accepted by area colleges. Matthew was in his second year, studying Political Science when his succumbed to heart failure. He was 20.
Patrick was accepted at the same college and earned a degree in Psychology. In his second year we traveled weekly to Baltimore participate in a study for a drug designed to slow the progression. For 7 months I took him every Tuesday to clinic and back, allowing him to make classes the rest of the week. (The study failed to show efficacy and was ended.) Patrick worked at the university after graduation, yet when the program was eliminated, he chose to start streaming while playing video games online, entertaining subscribers.
The past two decades seem to have slipped by, yet the reality is our time has been very full getting better care for our sons and working to improve the outcomes for everyone affected by DMD. It’s encouraging to see drug developers interested in this condition. There are currently several products in clinical trial believed to be able to help patients.
We support a number of research programs which are funded by advocacy organizations such as PPMD and the Hope for Gabe Foundation.
The work isn’t finished and it will take collaboration from the drug companies, advocacy groups, patients, and families to one day end Duchenne.
Until that time, I will keep supporting those efforts like those of Ride4Gabe. Riding to raise awareness and ending Duchenne is an uphill battle. Today they need your support, encouragement, and prayers. And donations.
Please consider giving $15 a mile to help the Hope for Gabe Foundation continue fighting to beat Duchenne. BONUS: Your donation to the Hope for Gabe Foundation is tax-deductible. (Please consult a financial advisor for specific details.)
If you would like to follow Ride4Gabe's journey to Colorado, you can find them on Facebook. The cyclists will be live-streaming Ride4Gabe IV on Facebook. Your comments or questions across all social media posts will keep them charged for the final push to the summit.
Thank you Michael, Brian, and Demetrious for all that you are doing for our boys.
Ride on, Brian
Facebook Fundraiser (*no fees): https://www.facebook.com/fund/HopeforGabe/
Our Route – www.ride4gabe.com