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Everest to End Duchenne 2017

$7,830 of $10,000 goal

Raised by 66 people in 18 months
In October of 2015, I took my first team of Everest to End Duchenne trekkers to Nepal and Everest Base Camp.  We spent 17 days hiking through the Himalayan Mountains on a symbolic journey for those who suffer from Duchenne muscular dystophy, like my son, Gus.

On September 25, 2017  a new team will again embark on the adventure of a lifetime -
Everest to End Duchenne 2017!


DMD is a terminal and progressive muscle wasting illness, for which there is currently no cure or even an effective treatment that can prolong life.

In 2015, we carried the names of over 700 boys printed on a flag to base camp, and once there, read every name into the wind, carrying a message of hope for a cure over the rooftop of the world.

On that first trek, I realized that Everest to End Duchenne had become a unique and inspiring campaign, not only for the families of the boys we "carried" to base camp, but for the hundreds of friends, family and strangers who followed our journey through social media.  

The ETED team felt incredibly supported, both financially (with donations), and emotionally, as we all struggled with altitude sickness, muscle aches, head aches and nausea periodically on our trek.  But these ailments were short-lived, and nothing compared to what our children with Duchenne suffer from every day.

As soon as we completed ETED 2015, I began planning for the 2017 trek.   This was a fundraiser that spoke to people and helped spread awareness about Duchenne all over the world - so my hope is to make it bigger and better this time! Our team goal is $100,000 towards medical research!

Stay tuned for updates, blog posts, photos, and info on Everest to End Duchenne 2017. Visit the ETED website here  Everest to End Duchenne. Be sure to view the trailer for the documentary we made in 2015, "Into the Wind."

And please help me reach my personal goal of $10,000 if you are so moved. Every dollar helps move us closer to saving the life of not only my baby boy, Gus....... but of EVERY person with Duchenne!




Thank you for being part of the journey to a cure!

Tonya Dreher
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So I’ve been waiting to write my final post about Everest to End Duchenne. Waiting….for some kind of epiphany, or maybe just closure. But it hasn’t come to me.

Two years ago it was different. I was told a story from the Buddhist culture about how before he is even born, a child chooses the family that will give him the best shot at a good life

( https://everesttoendduchenne.org/what-have-i-done-that-is-really-hard-for-me/),

and suddenly it all made sense to me. I knew that in addition to raising money and awareness, that story was what I was supposed to learn and understand from that first time on Everest.

This time, I have been waiting…because I definitely struggled during the trek. What was I supposed to learn from that struggle? I still don’t know, but let me describe it:

I developed the Khumbu Cough again, so I was hacking constantly, sometimes so hard I would gag. But there was something different about it. This time it was really affecting my breathing. Periodically, I could not catch my breath, and it was scary. It started happening before we reached Base Camp, but worsened as I was going over Chola Pass (hardest physical thing I’ve EVER done). It would also happen in the middle of the night. I’ve never experienced anything like it – the inability to get enough air into my lungs and the panic that ensues.

During the day, I could distract myself by looking at the view until my breathing normalized. Or if I sat down, it would get better. But waking up because I could not breathe was terrifying. And I made myself even more frightened by thinking about the fact that I was in a tiny village in the middle of the Himalayas, not accessible by car, with no doctor or hospital.

And then my thoughts went to Gus, and to all of our kids with Duchenne. I thought about how, as they grow older with this disease, pulmonary function dramatically decreases. If they live long enough, they will all be on ventilators or some other type of breathing assistance. The panic I was feeling at not getting enough air will someday be a reality for Gus. And even though technology can help him, technology malfunctions, power outages happen…. All just mind-numbingly terrifying to think about.

I cried myself to sleep those nights, got up exhausted the next day, and continued the trek as the slowest person on the team. Some days I cried as I was walking, but I was so far behind that I don’t think my teammates knew – just my sweet friend and guide Adhish, who held my hand and did not ask any questions.

I’m not sure why I didn’t talk to my teammates about how hard I was struggling. Maybe it was pride, but I don’t think so. I just think that if I spoke the words that I was thinking, I would never make it to the end of the trek. If I actually gave voice to the thoughts in my head, it would break me. And then each day, when I caught up with the team near, I was so happy to see them, to have a distraction from my thoughts, that I didn’t want to sink back down.

I kept thinking that this time would offer some kind of revelation for me, or that I would have an epiphany after so many days of struggling. But it didn’t happen…..so here I am, more than 3 weeks out from Everest, wishing that I had something inspiring to write for you. I am wishing that this journey changed me the way the trek in 2015 changed me. I am pondering it every day as I look through my photos and wrack my memories of those 16 days when I climbed to nearly 19,000 feet for our kids who can’t.
But I all I can come up with is this:

I needed to grieve and I needed to do it in a safe place. There is no time or space in my normal life to do grieving of that magnitude. I spend of lot of time trying not to think about Gus’ diagnosis and working to make our lives normal, but apparently there is a breaking point.

The last year and a half have been incredibly difficult for me. A combination of the clinical trial Gus is on, seeing him lose function, and knowing that children his age with DMD can die of heart failure put me in a perpetual state of anxiety that often surfaced as anger. I didn’t like myself and I didn’t like my life – but I kept moving faster to keep ahead of the grief.

And there is grief over Duchenne, but also grief for what I perceive as my own failure. I realized that every day that there is still no cure, every day my son loses more function, I blame myself for not doing enough. I think this is where the idea for Everest to End Duchenne came from – I was not doing ENOUGH, so what is the biggest, most extreme thing I could do?
And while ETED has changed my life in so many ways, I would give it up….I would give EVEYTHING up….to save my boy.

If only it were that easy, though.
I don’t know what the answer is. I don’t know how to stop feeling as though I have to do more. But I think the grieving I went through on Everest might be a start. And I’m so grateful to those of you who have been there with me- supporting, donating, following our journey.

It is far from over. There is more to come, more science to fund, more mountains to climb, more moments of joy among the grief. Thank you for taking this journey with us.

Tonya


Everest Base Camp
ETED Team
Reading names on the flag
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Hello Everyone! Steve, here, posting while Tonya is on Everest. She left almost two weeks ago and, by all accounts, the team is doing pretty well. They climbed up to just over 13,000 feet yesterday; they are getting into thin air.

I’ve found myself thinking a lot about a conversation that we had with Gus a couple of days before she left. Tonya went to Nepal before other members of the team because she wanted to spend some time connecting with people knows there. One stop was the Muscular Dystrophy Association of Nepal where they have a home and a school. Tonya had collected iPads and cell phones that she was taking for them to use in the school. She was telling Gus about it and Gus said, “Wait, there are kids with Duchenne in Nepal?” We replied, ‘Yes, Gus, of course there are.’ He replied, “Oh, I guess this is bigger than I thought.”

It was one of those moments that happen every now and again when you have a child with a terminal illness. The child says something that momentarily takes your breath away and forces you to lean on something for support. They are words you’ll never forget. Often they begin with “When I grow up….” There was the time when Gus came out to where Abe and I were playing basketball and he asked, “Dad, when I grow up, will I be able to teach my kids to play basketball?” Or the time when we were in at an outdoor restaurant in Mexico. We had seen a couple of dogs running around and Gus said, “When I grow up, I want to open a shelter in this town for all the dogs so that they’ll always have someone who loves them…”

But this was different, “Oh, I guess this is bigger than I thought.” There’s so much innocence In the understatement. This disease threatens his life and has overturned ours. It has pushed us to climb mountains, run races and throw galas to raise money for research. It keeps us up at night and it gets us out of bed every morning…“Oh, I guess this is bigger than I thought.” Also, it has introduced us to a world of young people and families from all over the world who suffer from this disease. They are brave and determined. We’ve met kids who passed away way to early and kids who cannot live up to their potential but somehow still live with joy and happiness. They have inspired us to keep working. They push us to raise money for research and to work with faith that we can save this generation.

Yes, this is bigger than any of us could have known, so for every kid on every continent who is stricken with Duchenne, Tonya and team are climbing every day. Their goal for this trip is to raise $100,000 to put toward CRISPR/CAS 9 research, a technology that has the potential to save this generation. Thanks so much for your support!
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Everest to End Duchenne starts in one week! Our team is ready, and we have some incredible individuals joining us this year. I feel so lucky, so blessed to have people like Maxine Dunn in Gus' life and on hour ETED team.

Please read this moving essay/article Maxine was wrote for a local paper. (You might have to cut and paste the link)

And please support our fundraising efforts if you're able!

http://www.sentinelsource.com/news/local/a-special-trek-for-a-special-friendship/article_eabadcba-8ae5-53ce-b421-72b809126135.html
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FINDING THE STRENGTH TO KEEP GOING

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
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$7,830 of $10,000 goal

Raised by 66 people in 18 months
Funds raised will benefit:
Hope for Gus
Certified Charity
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Peterborough, NH
EIN: 272224833
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