You won’t often find posts on this website calling for your help, but this case is certainly an exception. Justin and Dawn Rezkalla live in Powell, Ohio, and have been friends of mine and my family’s for the better part of two decades. Justin and my dad used to be co-workers, and despite their 16 year age difference, became the best of golf buddies, often times inviting me to join in whenever I was in town. Eventually, Justin and I ended up developing a friendship with our own tee times, laps around the Memorial Tournament at Muirfield Village, and stories and inside jokes about Bubba Watson and Steven Bowditch. Justin himself is one of the finest purveyors of #TourSauce on the entire planet. In fact, he hands down won the 2014 #TourSauce contest by having his entire family run out onto the green to celebrate his member-guest championship:
#TourSauce contest is over. @2PuttBogey just won the member guest at @SciotoReserveCC and pulled "The Family Move" https://t.co/WnHAhRzW0K
— No Laying Up (@NoLayingUp) July 19, 2014
In the video, you can hear his son Alex exclaiming “YAY DAD” and “YOU WIN!” over and over (click here for the more complete, and full version of the video….. seriously, watch it simply to see how excited Alex is). I don’t know Alex well, but this little kid is absolutely hilarious. Back in December 2015, our families met up for pizza, and Alex came in proudly wearing his new BB8 Star Wars t-shirt. He and Justin had just seen the movie, and he was all excited about. I talked to him about the movie, just making small talk with a 4-year old, and asked if R2D2 was in the movie (I had not seen it yet). He replied saying, “yeah but he’s asleep.” I didn’t think much of it at the time, but when I saw the movie about a week later, I thought back to Alex telling me that, and couldn’t help but laugh. He was exactly right! What he lacks in spoiler warning, he makes up for in Star Wars passion.
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Another funny Star Wars related story comes directly from Dawn’s Facebook page:
This bit of background can’t fully illustrate the relationship between our two families, and the kindness that Justin and Dawn have shown to our family for almost 20 years. Regardless of my ability to describe that, I think you can understand how heartbroken we were to hear this news almost a year ago. Dawn tells the story best in some of what she has written to the US FDA and elsewhere…
August 17, 2015 will be a day that I will never forget. It was on that morning, nearly a year ago, that we first learned our four year old son, Alex, likely had some form of muscular dystrophy. Time really did stand still as one phone call altered our family’s path forever. We immediately became card-carrying members in an exclusive club, but not the club anyone aspires to join. This club’s members are randomly selected by nature and suddenly find themselves and their loved ones hand-cuffed into finding a place in their hearts and minds for the cruel and unusual punishment that follows. In life, there are good days and bad days. On this journey, each day forward leads to more muscle decline. Without treatment, each day is worse than the previous.
Our journey to diagnosis began four weeks earlier. Alex was not growing at the pace of his peers. He was routinely mistaken as one year younger than his chronological age due to his short stature. Alex wasn’t able to jump, ride a bike, run with a full gait, or walk up stair steps independently. Mother’s intuition told me to seek answers.
Through a series of tests, we learned Alex had low growth hormone and elevated enzymes found in the liver. We completed four more lab draws for liver diseases, all with negative results. A specialist ordered one last test to measure Alex’s muscle function before scheduling a liver MRI. Those same elevated enzymes were also in muscle. However, with the rarity of muscular dystrophy, this was presumed to be another precautionary test to rule out something terrible that just couldn’t be. The specialist called me in less than twenty-four hours and asked me if I was in a place where I could sit down. I took the deepest breath I’ve ever taken. She told me that Alex’s muscle test was very elevated and the three lab elevations together pointed to muscular dystrophy.
The wave of events and emotions that followed that moment are simply indescribable. That was the phone call that changed our lives forever. In all of the misfortune, there has been much fortune; the first of which happened the next day. We drove twenty minutes to one of the country’s top children’s hospitals where we met with one of the world’s leading muscular dystrophy doctors and researchers. Someone who has been working in the neuromuscular field for over forty years.
I suppressed my emotions during much of our meeting while Alex innocently played and interrupted us. After a while, though, the tears started streaming down my face. The doctor looked me in the eyes and said, “You know… Alex is only 4 and in a few years, there are going to be some options for him. And I’m not quitting until we find a cure.” I cling to these words every day.
We received the genetic test results at the end of September 2015. It confirmed that Alex had Duchenne Muscular Dystrophy (“DMD”), the most common form of muscular dystrophy and also one of the most severe. For our family, the membership card had been inked. In short, DMD is a progressive muscle-wasting condition in which those diagnosed are unable to produce dystrophin, a protein essential for the repair and stability of muscle fibers. It is the leading genetic killer of children, occurring in approximately 1 in 3,500 live male births (about 20,000 new cases each year). Because the Dystrophin gene, made up of 79 parts, is located on the X-chromosome, it primarily affects boys. Boys start showing muscle weakness around the age of 3-6 and lose the ability to walk between the ages of 8-12. Muscle strength and function are robbed until young men lose their lives to heart or lung muscle failure in their 20s on average, but often times much earlier. Right now, DMD is 100% fatal. There is no cure and no approved treatments exist. This is not what any parent wants to hear.
The second fortune in our misfortune was what our doctor called to share with us next. He told me that Alex’s specific break in those 79 parts meant he is amenable to a drug currently in trial that had the chance to restore some dystrophin production. And our lives changed again with one phone call. Suddenly, our story could be different. Alex could have a chance at a better, longer life with DMD. On January 28, 2016, Alex received his first dose of drug through an IV infusion and has received one each week since then.
Alex is too young to comprehend his diagnosis. However, he is aware that he is not able to do things that his friends do. Although he’s adapted and accepted that, it frustrates him. He’s a curious, typical 5yr old now who asks what feels like thousands of questions a day. But the toughest question Alex has ever asked me came when I tucked him into bed right after we found out Alex got into the clinical trial last October. He must have begun to mentally process all the doctors visits and tests. He looked at me and quietly asked, “Mom? Am I going to be ok?”
I am not sure how I would have answered Alex’s question one year ago, three years ago, or ten years ago with this diagnosis. DMD research has been going on for more than 40 years and we just recently had clinical trials open in the last few years for potential treatment options. Alex’s story is unique, though. We went from diagnosis to a potential treatment option within weeks; not years. Our ability to do that was afforded to us by all of the medical professionals working tirelessly for a cure and all the parent-founded organizations in the DMD community fighting every day for treatment options, funding millions of dollars pennies at a time to labs, and marching on capital hill every winter to speak to government representatives. My response to Alex’s question was likely different than other moms before me who may have been asked that same question. My response was, “Yes