My name is Tonya Dreher and I live in Peterborough, NH. I am blessed with a wonderful and supportive husband, and 3 beautiful children. In 2010, my kids were 5, 7, and 9 yrs old and Steve and I just knew that we were the luckiest people alive. I had just beaten stage 3 breast cancer, and our children were seemingly thriving. We were on top of the world!
Our youngest son, Gus, was a happy, mellow, smart, but slow moving child. He was always dawdling, content to sit and play with plastic animals rather than run around like his brother and sister. We marveled at how laid back and sweet he was.
Just before he started Kindergarten, I decided to take him to a neurologist and I have no idea why. Maybe mother’s instinct? Perhaps the fact that he couldn’t jump worried me enough to seek out someone who could test his muscle tone or neuro-muscular status? I truly don’t remember.
But what I do remember is the look on the neurologist’s face after asking Gus to do a few simple physical tasks. He said he thought Gus might have some form of muscular dystrophy, but I still wasn’t too worried. I knew that there were many kinds of MD and that people with it could live long and fulfilling lives.
But then I went home and got on the computer. Duchenne kept coming up again and again in my searches and I just hoped and prayed and hoped some more that he had ANY kind of muscular dystrophy BUT Duchenne. I quickly found out that DMD is a lethal, terminal muscle-wasting illness, affecting one in 3500 live male births.
I will never, ever forget the day the doctor called with the test results. The day my son, Gus, was diagnosed with Duchenne muscular dystrophy. Our world crashed around us and every hope and dream we had for our boy faded away.
Duchenne is devastating and will slowly take away all of Gus’ muscle function, and eventually end his life, if we do not find an effective treatment or a cure in time.
While most children gain skills during their childhood and lifetime, we have to watch Gus lose skills. He rode a trike for about a month, and then never rode a bike again. He used to be able to run, and now, at 10, he has a funny little jog that will soon slow to an awkward walk. Eventually he will take his last step and be confined to a wheelchair. Then he will slowly lose the ability to use his arms — he will not be able to feed himself, use a computer or hug us. Duchenne will eventually take his life, because the heart is also a muscle and the fibers are already breaking down.
It is still difficult to think of the simple dreams we once had for our family that we can no longer pursue — a family bike ride, walking on a beach together, hiking many mountains. Little things that my husband Steve and I dreamed of doing often with our kids when they were born. How quickly things change. . . last summer, Steve nearly broke his back carrying Gus up a fairly small local mountain, just because our boy wanted to reach the top so badly, and his own legs couldn’t do it.
We have been running the Hope for Gus foundation for 5 years. We organize fundraisers, write grants, try to spread awareness, and fund the most promising research we can find. And now, I’ve decided to challenge myself with something that will be difficult for me, but impossible for Gus to ever do. And I hope to raise money for a cure or effective treatment for DMD at the same time.
In October, 2015, I took the first ETED team to Mount Everest Base Camp. We completed a 17-day, 80-mile trek from Lukla to the Everest Base Camp on the Khumbu Glacier in Nepal. And raised $50,000 for Duchenne research. We went back in 2017 with a team of 11 trekkers and raised $100,000 and now we are heading to Nepal again for ETED 2019 in November.
I am focused on bringing other parents of boys with Duchenne on this trek (but others also!), because this journey is symbolic for us. As our boys lose their ability to walk, we will take on a difficult walk FOR THEM, and raise money for medical research at the same time.
Every step I take up to Everest Base Camp will be for my son Gus, and every boy with Duchenne. Please support this effort if you can.
Many, many thanks for taking this journey with me. — Tonya