I will never, ever forget 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.
It is 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 it so badly.
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 for DMD at the same time.
In October, 2015, I am going to trek to Mount Everest Base Camp. I am forming a team that will embark on a 17-day, 80-mile trek from Lukla to the Everest Base Camp on the Khumbu Glacier in Nepal.
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.
So far, I have a team of 8!! Each person will raise a minimum of $1000 for our mission, and is responsible for their travel costs. My goal is bigger. I would like to sponsor the parent (s) of a child with Duchenne who cannot afford this trip, but truly wants to do something big for their boy, and raise awareness for Duchenne. So after I reach the $5000 mark, I will fundraise for a sponsorship for one family member.
All funds raised will go to our foundation, Hope for Gus , and we will choose one very promising therapy to fund through the Duchenne Alliance.
We will soon have a webpage dedicated to Everest to End Duchenne, where you can follow my team and our preparations for the trek, and also join us virtually in October when we embark on the adventure of a lifetime for our boys!
In the meantime, if you can help me reach my goal of $10,000, please help to end this devastating disease that afflicts my little boy and thousands of others. Please give generously if you are able, as I promise that not a single dollar of your donation will be wasted. But if you can only give $5 or $10… that amount is just as important and appreciated to get us to our goal.
Many, many thanks for taking this journey with me — Tonya