I Walk Because My Son Can't
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I will never forget the day I was told that my 4 year old son would probably die before I do. I was driving home from work. My wife called and said, "They think Gus has Duchenne muscular dystrophy." I didn't know what that was. "It's terminal," she said. I pulled over.
That night I sat on his bed as he slept. I looked at his perfect little four year old body. I couldn't imagine that same body would betray him; his muscles would slowly deteriorate; by the age of 12, he would be in a wheelchair full time. In his mid-twenties, his heart or diaphragm would give out and he would die. As most parents would have done, I decided that I would not sit by and allow that to happen. I would do everything I could to give him a great life and to save him.
In the seven years since that time, we have watched Gus struggle increasingly with his disease. He can no longer get up off the floor. He can no longer climb stairs. He can only walk very small distances. During those same years, my wife Tonya and I have started the Hope for Gus Foundation; we have collaborated with foundations from around the world to fund millions of dollars of research; I have served as president of the Duchenne Alliance, a group of over 30 foundations working together to defeat Duchenne...and we have seen progress. The first drugs have gone to trial. Stem cell therapies and CRISPR technologies look increasingly promising. It is a real possibility that we will realize the dream of saving Gus and this entire generation of kids with Duchenne.
In short, a lot has changed since that drive home seven years ago, but the need for us raise money to fund research remains as important as ever. That is why my wife hiked to Everest Base Camp last October, and that is why I am taking a team to Mount Whitney, the tallest mountain in the continental US in August.
We hike because our children can't.
We use these hikes to raise funds and awareness of this devastating disease.
We take the names and pictures of children with this disease to the highest peaks in the world.
We will not stop until we have saved this generation.
Please join us - or if you can't join us, support us financially.
If you are interested in joining, please contact me at [email redacted].
If you are interested in supporting us, please contribute above. 100% of your donation will go to fund research. Thank you!
That night I sat on his bed as he slept. I looked at his perfect little four year old body. I couldn't imagine that same body would betray him; his muscles would slowly deteriorate; by the age of 12, he would be in a wheelchair full time. In his mid-twenties, his heart or diaphragm would give out and he would die. As most parents would have done, I decided that I would not sit by and allow that to happen. I would do everything I could to give him a great life and to save him.
In the seven years since that time, we have watched Gus struggle increasingly with his disease. He can no longer get up off the floor. He can no longer climb stairs. He can only walk very small distances. During those same years, my wife Tonya and I have started the Hope for Gus Foundation; we have collaborated with foundations from around the world to fund millions of dollars of research; I have served as president of the Duchenne Alliance, a group of over 30 foundations working together to defeat Duchenne...and we have seen progress. The first drugs have gone to trial. Stem cell therapies and CRISPR technologies look increasingly promising. It is a real possibility that we will realize the dream of saving Gus and this entire generation of kids with Duchenne.
In short, a lot has changed since that drive home seven years ago, but the need for us raise money to fund research remains as important as ever. That is why my wife hiked to Everest Base Camp last October, and that is why I am taking a team to Mount Whitney, the tallest mountain in the continental US in August.
We hike because our children can't.
We use these hikes to raise funds and awareness of this devastating disease.
We take the names and pictures of children with this disease to the highest peaks in the world.
We will not stop until we have saved this generation.
Please join us - or if you can't join us, support us financially.
If you are interested in joining, please contact me at [email redacted].
If you are interested in supporting us, please contribute above. 100% of your donation will go to fund research. Thank you!
Organizer
Steve Dreher
Organizer
Peterborough, NH
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