For most young people celebrating a birthday is an exciting milestone. Although, for people with Duchenne Muscular Dystrophy (DMD), these birthday milestones take on a whole new meaning. Living with Duchenne forces one’s mindset to think of each day with a perspective that very few can relate to. As boys with this disease reach the age of 8-12, they become curious about why they are different, why do they have strange physical challenges and have to go to the doctor far more frequently than any of their friends. This is also when they start asking questions and have the ability to Google, “what is Duchenne”. What comes next is quite possibly one of the most crushing examples a parent could ever imagine of how their child would lose the last of their childhood innocence. The results from the Google search are abrupt, shocking and quickly bring an enormous rush of hopelessness. This feeling only worsens as one falls into the rabbit hole and starts reading the other overwhelming details of the terminal neuromuscular, muscle wasting disease, with no available cure.
The most common prognosis is that the average life-expectancy is 26 years old. But this number varies patient to patient, as some patients pass far too soon in their teenage years, most often due to a respiratory infection, (pneumonia) which they do not have the strength to overcome. In the most ideal and rare situations, boys can live into their late twenties and extreme outliers live into their 30s. But it is vital to note that for boys with Duchenne, each passing year brings drastic, negative downturns for their quality of life.
As their bodies suffer immense physical deterioration, they quickly are forced to transition into a lifestyle with limited independence. After they are confined to a wheelchair around age 8-13, next often comes numerous surgeries; from steel rods placed parallel to the spine to help prevent scoliosis, from feeding tubes to ensure boys receive the nutrients they need as feeding themselves becomes cumbersome and often times boys throat and swallowing muscles become too weak to properly digest food which leads to choking on their own saliva and food. There are many other serious changes, but often the last drastic step is having a tracheostomy which means they become dependent on a ventilator to allow them to continue breathing. In all, the lifestyle for boys living into their mid 20s becomes eerily similar to a patient with ALS, minus the slowed speech.
That being said, each birthday becomes less of a milestone achievement but rather more of another year closer to the inevitable worst-case side effects of the fatal disease.
Something to Really Celebrate
On January 28th, Ryan Benton turns 34 years old. A day our family could’ve never imagined after his initial diagnosis 31 years ago. Ryan is quite possibly the most fortunate person to ever live with Duchenne. When he was 23, his physical condition was following the common DMD progression and doctors anticipated he would be lucky to live another two years. Thankfully at this same timeframe, 11 years ago, he was given the opportunity to start receiving adult stem cell therapy thanks to the generosity and genius of Dr. Neil Riordan and the Stem Cell Institute. These treatments reversed the progression of his disease, allowing him the ability to fight back and slow down the otherwise inevitable common regression of Duchenne.
Today Ryan’s health and quality of life is far better than anyone else still fortunate to be living today. He also has an independence that is extremely uncommon, as he feeds himself, uses the restroom on his own, and breathes independently, only using a c-pap at night and occasionally during the day.
He is a full-time studio musician, spending nearly 40 hours a week working with his band and other musicians, producing numerous video projects, as well as assisting with a variety of advocacy functions for our non-profit. He knows that each day is a gift, so he is very intentional to challenge himself daily to learn something new and create a lasting legacy through his art that will shine a positive light for his loved ones AND those he doesn’t know but, those he knows his life will touch through the inspiration he breaths every day.
“By joining us in Coming Together, we will transform our hope into a solution we can all believe in”
– Blake Benton