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Ryan is Turning 34…The Day We Didn’t Know Would Come

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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

After their FDA exemptions expired, the first two Duchenne Muscular Dystrophy patients to be successfully treated with adult stem cell therapy meet for the first time.

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Ryan Benton received the first FDA exemption to be treated in the United States using mesenchymal adult stem cells derived from umbilical cord tissue, paving the way for others to follow.

After first receiving six treatments outside of the United States at the Stem Cell Institute in Panama City, Panama, Ryan was granted an FDA Compassionate Care exemption making him the first person with his disease to be treated in the United States.

The exemption was granted under the provisions as an Investigational New Drug, allowing him to receive two treatments per year over a three-year period. After the first year of treatments yielded the anticipated results, the treatment protocol was extended to three treatments per year. It has been determined that the treatments prove most effective when re-administered every four months, this allows the therapy to maintain effective results.

Today, Ryan Benton is 32 years old and has been receiving adult stem cell therapy under the protocols presented by Dr. Riordan of the Stem Cell Institute since 2009. It is an extremely cumbersome ordeal for Ryan to travel such lengths due to his physical limitations and the hassle brought upon by traveling with a power wheelchair and other medical devices he relies on. This a key reason it was such an accomplishment to be able to receive treatments at medical facilities closer to his hometown. Ryan is one of 35,000 people in the U.S. and over 300,000 worldwide affected by Duchenne Muscular Dystrophy.

After the success of Ryan’s first treatment, three other DMD patients traveled to receive the same therapy at the Stem Cell Institute. All the other DMD patients experienced the same successful results from the stem cell therapy, although due to the travel difficulties only Ryan and one other DMD patient has been able to maintain treatments on a necessary regular basis.

The other DMD patient Isaac, an 8-year-old boy from Indiana. Isaac was provided the opportunity for treatments after his parents learned of Ryan’s story and contacted Coming Together for a Cure, who helped provide insight on the treatment process, the science involved and helped connect them to the necessary resources to gain access to the treatments.

Isaac has been receiving therapy at the recommended frequency as Ryan since the age of three and now is in far better physical shape compared to other boys his same age with DMD. Isaac has received 13 total treatments, beginning in October 2012 at the age of three. Isaacs first 6 treatments all took place at the Stem Cell Institute in Panama.

After the first year of Ryan’s FDA exemption, Dr. Riordan petitioned the FDA to allow for Isaac to be granted the same exemption. Once again, thanks to the proven success of Ryan’s treatment’s and Isaacs sustained success from his treatments, the FDA granted Isaac the green light allowing him to receive six treatments over the course of the three years at Riley Hospital for Children in Indianapolis. This was an enormous blessing as by having the treatments available in their own backyard, the would not have to deal with the numerous complications of traveling out of the United States.

Ryan’s FDA exemption expired in fall of 2017 and Isaacs shortly after. This left both families no other choice than to make the long arduous trip to Panama for each of their next necessary rounds of adult stem cell treatments.

By a complete coincidence of timing, Ryan and his brother Blake happened to be in Panama at the Stem Cell Institute at the same time as Isaac and his parents. As Blake was preparing to carry Ryan down the jet bridge into his seat on their connecting flight in Atlanta to Panama, Isaacs parents realized that right in front of them was a man who had given them such inspiration and helped connect them to the life-changing treatments they were continuing to embark on

Ryan and Blake have communicated regularly with Isaac’s family over the years, keeping up to date with each other’s treatments, but until now had never met in person. The rest of the week, the families spent time together, building genuine friendships built upon their unique shared experiences of being the first two people in the world with their devasting disease to be successfully treated. Young and old, trailblazers together for the first time, a glimpse of what is possible for many other boys and families waiting for their opportunity to receive life-changing adult stem cell therapy.