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blake@ctfac.net

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

By | Uncategorized

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

stem cell treatments help ryan benton

Maintained stem cell treatments for Duchenne Muscular Dystrophy help Ryan Benton continue to fight back

By | News

stem cell treatments help ryan bentonThere is a big difference in a “treatment” and a “cure”. This is something we learned early on as Ryan began receiving adult stem cell treatments. Many people assumed that when we said we had found a therapy that worked that meant that we had found a cure.

We realized the impact from the new mesenchymal stem cell injections lasts for about 3-4 months. At the 3-month period the improvements begin to taper off and plateau for a couple weeks until we see the traditional effects of Duchenne appear once again.

We have identified that as long as Ryan is able to maintain treatments on the proper regimen of 3-4 months, he is able to prevent the disease from advancing further at an increasing and aggressive rate. We wanted to highlight the importance of the continued therapy because many people simply assume that the treatments can be a one time “cure-all”. Unfortunately as of right now, that is simply not the case.

Making Life Easier

Simple tasks, (everyone without DMD might take for granted) become much easier for the first 3 months after each round of therapy. From holding his phone, toothbrush, to picking up his utensils while eating, even when he is at his desk working on his music, simple tasks from controlling the mouse to working his computer keyboard become much easier. These small improvements are leaps and bounds for Ryan as it provides him an independence that without the treatments, he would never have again.

How it works

Ryan’s disease, Duchenne, is caused by the absence of a functional protein on the mutated gene, called Dystrophin.

Dystrophin is necessary to break down and repair muscle tissue – without it the cells are unable to hold their shape causing fibrous tissue to form in the muscle and increased inflammation throughout the body and immune system.

For Ryan, these newly injected mesenchymal stem cells home in on areas of inflammation and identify the cells in his body which lack the Dystrophin protein. At this point the new mesenchymal stem cells repair the cells negatively impacted by his disease and allow them to produce Dystrophin which allows his body to fight back against the disease for roughly 3-4 months.

After 3 months, the newly injected stem cells are essentially “used up” which means at this point the improvements plateau for a couple weeks and then eventually are all overtaken by the disease once again.

Improvements

On average the treatments first begin making a difference within two weeks following each round of therapy.

During the next few weeks we see a significant improvement in Ryan’s respiratory and muscular strength. We notice he finds it easier to breath and has less shortness of breath. We validate this and many other improvements in his pulmonary function by measuring through a weekly inspiratory and expiratory lung function test.

We notice continual improvements in his muscular strength related to his core, trunk strength, balance. As well as improved ability to utilize his upper extremities, (his arm, and grip strength)

Promise Ahead

It is frustrating this not a “one-time fix” and some people see this situation as inadequate and not worth believing in. Our only response is, why not accept a continual and proven therapy vs. having no improvement at all?

We are thrilled to maintain Ryan’s treatments on a continuous basis as we know that the researchers are steadfast working to improve this therapy and eventually make this therapy a one-time fix.

“By joining us in Coming Together, we will transform our hope into a solution we can all believe in”
– Blake Benton