A heartbreaking farewell to Joshua, a young boy with DMD
A few weeks ago, the Duchenne community received a painful blow. A young boy named Joshua, not quite 12 years old, passed away from heart failure. When our children are diagnosed, the doctors say that their projected life span is early to mid 20’s. Some men with Duchenne muscular dystrophy (DMD) live longer, and many, many die much younger.
The news about Josh literally made by heart skip a beat and I had to remind myself to take a breath. He was a smart, funny, motivated, inspirational kid – and so well loved by his family and community. How is this still happening? With all of the research we are funding and all the clinical trials in place, we STILL cannot save our boys. This reality keeps me awake at night and it drives everything I do.
Joshua was two months younger than Gus. As my heart breaks for his family, I cannot stop myself from putting us in their shoes. It could happen…it WILL happen…if we do not find the right drug, or combination of drugs to stop this monster that is DMD.
For so many years after my son Gus’ diagnosis at age four, I was able to be positive, to keep going, pushing, believing and having HOPE FOR GUS that the terrible fate described to us by his doctor would not be his future. How could that possibly be his future when we, along with so many other parents, are working day and night to fund potential cures, collaborate, advocate, educate….?
Seven years ago I created the Hope for Gus Foundation to raise funds for DMD research and in 2015 a group of us trekked to Everest Base Camp as part of a fundraiser in support of kids who couldn’t dream of making such a journey because of DMD.
For years, I felt as if I was possibly making a difference. I had hope that we could change the fate of THIS generation of kids who suffer from Duchenne. But now, I’m not so sure. Now Gus is 12….now he has crawled up the mountain as far as he can go and is beginning the steady slide down the other side.
At times, I have thoughts of giving up on this fight, of stopping the constant battle and focusing my energy only on being present with my boy. I receive a flurry of emotions and am consumed with so much sadness and anger. I have so much anger, that if I stop fighting I will drown.
When these waves of emotions finally pass, I take a deep breath, mentally and physically choose to keep going and that is my survival plan.
I WILL climb Everest again for my baby boy Gus who cannot – I will do it for the memory of Joshua and for every single person afflicted with Duchenne muscular dystrophy. I will do it every year, I will bring more people, I will raise more awareness, and I WILL blow the roof off my fundraising goals, because these are the things I CAN do. I cannot give Gus back the ability to stand up on his own or to ride his bike. I cannot take away all of his anxiety about losing control of his body. And I may not be able to save his life. But in the end, I will know, and HE will know without a doubt (I hope), that I did everything I knew to do to save him…to fund critical research….to tell the world about this devastating disease…to make his life MEAN something…
And I hope it’s enough.
Tonya Dreher, founder of Everest to End Duchenne and Hope for Gus Foundation
Please consider donating to the Everest hike at GoFundMe.