Founder’s Focus – Ryan’s 33rd Birthday

Birthdays are a funny thing. In youth, they are something you look forward to every year, and most boys can’t wait to grow up and do the fun things they see older boys doing; driving, playing high school sports, traveling, girlfriends, college, landing your dream job or chasing your childhood dream of becoming a professional athlete.

Growing Up With Duchenne Muscular Dystrophy

For young boys with Duchenne Muscular Dystrophy, (DMD) birthdays take on a whole new meaning the older you get. Unfortunately, for many of these boys, all the main things they look forward to when they are young never become a reality. This is because the majority of boys with DMD lose their ability to walk by 10 years of age and are forced into a wheelchair. Over the next years their health and strength continue to diminish to the point where the disease begins to become fatal, often by their late teens to early twenties. So basically, right when these boys start to mature and lose their childhood innocence, the devastating reality sinks in. They not only begin to learn and comprehend the disease they have and what their future holds, but they start to experience the most drastic first effects and consequences.  This is something that resonates with me personally, as I grew up and began achieving my childhood dreams I was able to gain a true understanding of how fortunate I was and never take that for granted.

Ryan is 7 years older than me, I was in the perfect position to witness firsthand, all the fun things he and his friends were able to do as they grew up. Thankfully, Ryan was blessed with an amazing group of friends that have always done everything they can to make sure Ryan was never left out and able to experience important milestones in his life.

When Ryan turned 18, like most young men, he wanted to move out and gain independence away from his parents. He and his friends did and they started their college years. Unfortunately, most boys with this disease are never able to move out from their parents’ home and have the freedom to enjoy the fun experiences and opportunities that the college years often hold.

Around this same time, Ryan and his friends started a band, playing local shows and even a couple tours, one of which went all the way to Florida. This was one of many examples where Ryan’s friends help with everything they can so he can live out the life he and many young men could dream only of.

After Ryan’s 20th birthday, his health began to take a steep decline and it was clear that the disease would not only get in the way of him trying to live a “normal” life, but more importantly, we all knew that things would only continue to get worse at a much quicker rate.

The ultimate birthday gift came when he was 23 years old and our prayers were answered as a new and first of its kind therapy was available. Ryan became the first person in the world with Duchenne to receive adult stem cell therapy which halted and reversed the progression of his disease.

How Far We Have Come

Now, 13 years later and going on 19 rounds of stem cell therapy, Ryan is celebrating his 36th birthday. Even though he is not in as good of shape as he was when he started treatments 13 years ago, the strength and improvements therapy provides has allowed him to be in far better health.

On January 28th 2019, Ryan had one of the best birthdays he’s ever had, his band is still intact and all his bandmates came to our home studio to record the music they love and work on their 8th album.

When doctors diagnosed Ryan at the age of three, they told our parents that there was no cure and he would likely pass away due to complications of the disease by his early twenties. Each day I thank God that those doctors were wrong, and that Ryan is continuing to live his life not bound by the disease and instead is carrying the torch for other boys and families with DMD that someday soon they can receive the ultimate birthday gift of an adult stem cell treatment.

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