From Tonya

Steve was outfitted with a tracking device for the Whitney expedition, courtesy of tech guru Mark Gallagher. Mark was finally able to track the team last night and see where they were camping – on the Pacific Crest Trail.

Ben Stein was able to gather some weather reports today for the area (see photos). Not very good!!! Below commentary is for the green and yellow map.

“Hope the team is staying dry – today looks rough – here is the current radar picture- The yellow spot is where they camped last night and the mouse cursor is where they’re headed for tonight- that purple area is snow on the top of Mount Whitney. Pretty awful for 11am.”

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From Tonya

So, Steve has been hiking in the wilds of California since early Friday morning. I have not heard from him….no one has heard from the team. I’m sure they are fine…but I am anxious anyway.

They are carrying very heavy packs, and I heard this afternoon that it has been storming there and that there will potentially be snow near the summit. I’m not sure that they were prepared for that….
I’m worried, but I’m also proud. So proud of these five individuals who took 2 weeks out of their very busy lives to take on a very challenging trek…all for our children with Duchenne.

People think Everest was a big deal, and it kind of was…. EXCEPT…I had a porter carry my gear, and I had a tea house (sort of a shack, but still!) to stay in each night, AND I had cell service most of the way! I could let my family know that I was ok! How crazy to have cell service in the Himalayas, but not in CA!! We were also passing through many villages with local people who could get us some kind of food, treat an injury, or get a message for help if we needed it!

Steve, Chris, Alaina, Julie and Gregg are TRULY on their own, with only each other to rely on, plus the gear on their backs. These people are my heroes. I am praying for them, I am indebted to them, they are helping move us closer to a cure.
Please donate if you can!

Ain’t No Mountain High Enough…

Mrs. S.

Gus ‘graduated’ from 4th grade in June. It was a cute little ceremony and we couldn’t help but notice that his teacher’s voice broke a bit as she read his name. Just a few days earlier, I saw this year’s seniors graduate from Souhegan High School and step proudly into the tremendous potential of their lives. Mrs. S. may have gotten choked up because she knows that the time between now, when Gus is 11, and his high school graduation – 8 short years – are going to be incredibly difficult ones for this curious and happy little boy who she’s gotten to know this year. He may even be denied the joy that every graduate has – of looking optimistically into the future.

In that way, she felt a little of what parents of any child with a terminal illness experience every day. We are stuck between embracing every moment we have with our wonderful kids and dreading every moment that passes because it brings the inevitable closer. As she handed him his ‘diploma’ I think she may have also realized something else. The only way out of that terrible catch-22 is through hope. She sent him into the world believing that he would be able to fulfill his potential if only because, once you meet him, it’s impossible to imagine that he won’t.

In the past, that hope may have seemed naïve; Duchenne Muscular Dystrophy has proven to be a stubbornly difficult disease to treat. In the past few years, however, we have seen incredible progress. In the past few months alone, Hope for Gus has received grant requests for research involving gene therapy, stem cells, heart treatments and more. Our scientific advisors are considering each of them. Additionally, a number of drugs are going to trial, and this month, researchers began looking specifically how CRISPR gene editing technology might treat Duchenne. It’s an incredibly fertile time for Duchenne research. We just need to do two things – keep funding the good science – and keep believing we’ll save this generation.

That is why we are climbing Whitney – to raise money for research. As the tallest mountain in the lower 48, it can represent a lot: The uphill slog that researchers have had in figuring out this disease; the struggle that Gus and all kids with Duchenne face every day; the fact that we won’t stop and we will justify the faith of people like Gus’ teacher. As Marvin Gaye famously said, “There ain’t no mountain high enough…” to keep us away. Thanks Ms. S. for believing we’ll make it to the top!

What have I done that is really hard for me?

What have I done that is really hard for me?

It was as simple as me thinking, “What have I done that is really hard for me?” It was very late one October night in 2014, I couldn’t sleep, and this idea kept running through my head, as I thought of how hard every day is for Gus.

I sat at my computer, aimlessly searching for who knows what? Things that are hard? It sounds absurd….but Everest kept popping up on my screen. I emailed my friend Mark, a mountain adventurer, asking about Everest. The next thing I knew, I was securing the domain name, Everest to End Duchenne, and committing myself to something I was not even close to believing I could accomplish.

While I would never, ever in a million years call Duchenne a gift, it HAS given me something that I might never have had without it. It has allowed me to think and to dream bigger than I ever imagined. I dream every day for a cure for my boy, even though it feels so far out of reach. And this rolls over into every part of our lives…instead of the luxury of getting caught up in the day-to-day of making money or getting ahead or planning for a future 30 years down the road, I was dreaming BIGGER.

I was dreaming and believing that I could save my son. And if I could do that, I could also believe that I could trek to Everest. And I did it. Six years ago, you would never have convinced me that my body could do that – especially after coming down off of 15 months of cancer treatment.

But Everest was so much more than proving to myself that I could do it. It was even more than the amazing amount of money we raised. It was the miracle of hundreds of people joining together for our cause, cheering us on, and believing in us. We could feel every single good wish and hope as we trekked those last steps to read the names on the flag of hundreds of boys and girls, living with and dying from Duchenne. It was more than powerful.

But it was also about our team. Seven people coming together for a common cause, and 2 Nepalese guides who had no idea what they were getting in to! Every day on our trek was an exercise in patience, strength, tolerance and love. My favorite thing about the journey was the time I was able to spend with each person – dropping into step with someone and talking for an hour or more. With Brian, I talked about our boys –Gus and Griffin- and our fears and dreams for them. With Kent, we discussed clinical trials and the medical community, he wanted to know everything. With Dave, my friend of 25 years, we reminisced about the past but also discussed our children and our struggles and hopes for them. With Gregg, he enlightened me about Buddhist ways and stories that helped me realize that Gus chose us as his family. Chris – he already knew my struggle and my family intimately, he was a supreme source of comfort. And Anna…my female comrade! She made the trip so fun and tolerated my craziness. Dev, our head guide, held my hand when I was dizzy and walked next to me for miles (on the dangerous side of the trail), and Adhish, always at my elbow to take my poles or carry my pack when I was too tired. Every one of these people was so integral to the journey and I know there were all supposed to be there.

But there were also times of extended silence…when the trail became difficult and we would all fall in line, silent, behind Adhish…with Dev at the rear, watching our every step. These times of silence were when I feel like I learned the most. I wasn’t worried about what was in front of me or behind me; I was free in my thoughts, which never happens in my hurried life. All I had to do was walk. And for the first time, I wasn’t afraid. I didn’t feel solely responsible for my son’s life…I just felt alive. I realized that my job is really not to save Gus. My job is to be his mom and to love him….and a huge burden was lifted.

A Buddhist story tells of how when a child is waiting to be born, they can chose their family. And so they look down, and they choose the family that will give them the best shot at a good life. And Gus chose us…I don’t know why. But he didn’t chose us to save him, he chose us because he believed we could give him a good life. So that is my mission, that is what I learned trekking to Everest, and that is what I will do.

Miracles

Miracles

The team has safely come off the mountain; they’ve done something profound – and that profound thing is not that they successfully completed a challenging hike. The hike was always just the vehicle to achieve something much bigger. They wanted to face challenges that Duchenne patients face every day – they wanted to put themselves on the edge because Duchenne patients and their families live on the edge and, finally, they wanted to demonstrate that this community is powerful by taking 1000 people who have Duchenne with them.

The day that the team reached Base Camp, I received the following text from Tonya:

“As we were hiking to Gorek Shep yesterday after lunch, this American guy was sitting on a rock waiting for us. He said, ‘I hope I am not talking out of turn, but we’ve stayed in the same places the last two nights – does someone in your group have a cough?’

I said, ‘Oh yeah, it’s me, but I have had it since we left the States and my chest doesn’t hurt.’

He said, ‘Well, I’m a doctor from Georgia and I specialize in lung conditions, I’m pretty sure you’ve developed pulmonary edema…fluid in the lungs that’s not draining. High altitude makes it worse…’

He gave me some expectorant and continued hiking. The next morning he was returning from Base Camp while we were climbing up. He listened to my chest and said, ‘If you’re going to make it to Base Camp, we need to get some fluid up. So, he draped me over a rock and did a pulmonary percussion. It really hurt, but a bunch of fluid came up. I actually felt better, and we kept going…”

After reading her text, I, of course, went directly to the internet. The internet, of course, made things worse. I found this on the Mayo Clinic site:

“Pulmonary edema that develops suddenly (acute pulmonary edema) is a medical emergency requiring immediate care. Although pulmonary edema can sometimes prove fatal, the outlook improves when you receive prompt treatment…”

I don’t even know how to think about what might have happened if a pulmonary specialist from Georgia hadn’t happened to cross paths with my wife on the way to Everest Base Camp in Nepal. I can only be thankful and draw hope from the fact that he did.

I also don’t really know how to think about my son’s future. Intellectually, I know what they tell me is going to happen. At the same time, I am aware that I can’t know what stranger might be sitting on a rock on the side of our path ahead. “…this American guy was sitting on a rock waiting for us… ”

The team wanted to put themselves on the edge because people with Duchenne live on the edge every day. They did that, and in so doing showed us again that miracles happen. Sometimes, when I am speaking at a fundraiser, I offer the disclaimer that I am biased. Because my son has Duchenne, I badly want a cure. Then I explain that my bias doesn’t change the fact that science is truly close.

I don’t often talk about the other thing that keeps me going – I have seen miracles happen. Inexplicable, unexpected, miraculous things… “ I’m a doctor from Georgia and I specialize in lung conditions…”

As the team prepares to return to Kathmandu, they can do so knowing that this hike achieved something profound. It pulled this incredible community together, it took 1000 boys to the highest mountain in the world, and it demonstrated that we’re not crazy when we believe in miracles.

I had an interesting discussion with Gus today.

I had an interesting discussion with Gus today.

I had an interesting discussion with Gus today.
“Hey Gus, Mom started climbing today…”
“I know.”
“You understand why she’s doing this, right?”
“Yes, to get money to give to the scientists so they can make me better medicine.”
“If you could get medicine to help you do anything, what would it be?”
“Run…and climb so I could be with Mom right now…”

Yes, they climbed today, their first day on the mountain. All were anxious to get there, but their days in Kathmandu were well spent. Probably the highlight (at least judging from my brief conversations with Tonya) was her visit with Nirmal Khadka and Raju, a 16 year old young man with Duchenne. Nirmal is the founder and chairman of The Muscular Dystrophy Organization of Nepal.

We have known from our work with The Duchenne Alliance that the community of Duchenne patients and their families is worldwide. Tonya felt so honored to experience the strength of that community in her meeting with Raju and Nirmal.

When I think about my conversation today with Gus, I can’t help but think about his Duchenne brother in Nepal who has lived his life in the shadow of the biggest mountain in the world. Unfortunately Raju Khadka is not on the flag that Tonya and team are carrying up Everest. I know, though, that he is in all of their hearts.

Speaking of hearts, once again Gus broke mine today (He does it regularly). Of course he doesn’t understand the complexity of developing medicines. His faith that we’ll ‘make better medicine’ is staggering. It is the challenge we live with daily. I look into Gus’ huge trusting eyes and this week Tonya looked into the eyes of a young man who deserves to climb the mountain he’s lived under his whole life. We know what we have to do.

Specifically, we are considering two very promising trials; one involving gene therapy, another involving a naturally occurring human hormone. Both are potentially ‘better medicine,’ and both are moving to trial. We will get as much expert opinion as we can and we’ll use the money from the Everest team’s climb to fund one of these. We will make sure that every efficiency is in place while maintaining scientific standards of safety and efficacy.

With everyone’s help, Gus’ simple vision will come true. We will provide ‘better medicine’ and we may even see a day where he can run (and climb).

Please donate if you haven’t and thank you!

Steve

4 days until I leave for Everest.

4 days until I leave for Everest.

4 days until I leave for Everest. It’s almost midnight…I can’t sleep. All of my gear is strewn all over the living room floor and I am just staring at it. Part of me is wondering, “What in the world am I doing? Why did I think I could do this?”

How can I leave my family for 3 weeks and how can I get up that mountain? I have been hiking consistently for a year, but something tells me that may not be good enough. Steve is a very capable father, so I’m not worried about him taking care of the kids…but what if a catastrophe happens and I can’t be reached?

In the video we had made, the first thing I say is, “ I never felt like I was doing something that was really hard for me, but my son is doing something hard every single day.”

I haven’t even boarded the plane yet, and I already feel like it’s been hard…so I guess I’m getting what I asked for. I injured my knee a few months ago, had physical therapy, it’s mostly better. But then I took a MAJOR fall a few weeks ago, hiking Mt. Monadnock with Abe in a storm. I fell so hard, I bounced my chin off a boulder (big bruise), had a contusion the size of 2 softballs on my thigh, and pulled a bunch of tissue/ muscle in my chest wall. At first we thought I cracked a rib…thank goodness I didn’t.

And I was Just MAD….I was thinking, here I am training my butt off so I can do this fundraiser for our foundation and nothing is going the way I thought it would. For example – I thought I would lose some extra pounds, since I’m hiking 20-25 miles per week, right? Um, no. Actually, my rear end has increased in size so much that I can’t even wear my jeans! It’s my gluteus maximus building muscle from all the hiking….but that was NOT my plan. I also didn’t plan on injuring myself so much.

Then the other night, Steve said, “Well, you said that you wanted to do something that was really hard…..” And I realized….I had been thinking that Everest would be the hard part. But it’s been hard all along….and also great at times. I have seen beautiful parts of NH that I may never have experienced without this training, I have spent hours alone in the woods, on the trails, and it’s so therapeutic, I have felt my body get stronger.

And that is what life is like with a child who has a progressive and terminal illness. There are so many great moments every day, because he is funny and smart and goofy and loving and charming….but he is also losing the battle. And that fact casts a shadow over every moment with him. Our hearts swell with love and pride every day…and they break with sadness every day. And it’s SO hard.

I don’t know what my 3 weeks on Everest will be like. I don’t know if I can do it. But I know that I have the best inspiration in the world and I will do the very best that I can do to trek every single step for my baby.

If you haven’t seen our video, please view it here on Go Fund Me or at www.everesttoendduchenne.org and SHARE it, so that we can spread awareness about Duchenne. If you are able to donate, please do – I still have a ways to go to reach my fundraising goal. ALL money donated will go to fund the most promising therapy we can find right NOW.

And please send positive vibes and prayers to the Everest to End Duchenne Team….7 people trekking to try and save the lives of these boys.

Much love and gratitude,
Tonya

Traveling

Traveling

Happy almost end-of-summer everyone! We had a very fun and busy few months, which included lots of swimming, hiking (for mom, anyway) and travel.

We spent three weeks traveling to Minnesota, stopping to visit family and friends along the way. While it was mostly awesome, there was definitely a shift in how we can accommodate Gus away from home.

We have worked hard to make our home in NH a place where he can go anywhere he wants easily. We bought our property because the land is very flat, and the main floor is the majority of the house, with no steps to get into the house. We have made minor accommodations, like adding a bedroom for him on the main floor, but other than that (and trying to keep the house picked up so he doesn’t trip over objects) it’s a safe place for now.

When we leave home, it’s a different story. Sometimes it feels as if we are entering a minefield. Houses and restaurants with steep steps just to get in the front door…hotels w/o elevators, no bathroom on the main level (he did a lot of peeing outside), hills that he cannot walk up OR down, fun things like go-carts and boats to climb into become a major source of anxiety. And these few things are just the beginning. Isabel and I can still carry him upstairs (not Steve because of his back surgery).

There was just a lot of stress among the fun. And that is our new reality as Gus’ Duchenne progresses. We have to think really hard about our next trip. We need to make sure everything is accessible BEFORE we go and we need to think really hard about what is realistic for our family.

One (of the many) bright spots was when we were visiting good friends in Wisconsin. Abe was SO excited because they had a trampoline. . .but my heart just sank. A trampoline is a total nightmare for a kid with DMD — they want to jump so desperately, but it’s impossible. It looks SO fun, but they can’t do it. And here is what happened: Our older kids and the kids of our friends figured out that they could sit Gus in the middle of the trampoline, surround him with 2 or more kids to hold him and keep him safe, while the other kids bounced them! He had a BLAST, he was included, and my faith was renewed.

This is Duchenne. . ..you feel as if your heart is breaking for your child for the 100th time, and then people step up, they have compassion, they solve problems, and they make your child feel normal — even if it’s only for a short time. It’s priceless.

We are so close to our goal with Everest to End Duchenne! Please consider giving to this campaign so that we can fund more medical research to keep our boys walking longer and living stronger than ever before!

Perspective as Gus’ mom

Perspective as Gus’ mom

We have been very busy with the Hope for Gus sponsored production of Oliver Twist! It was incredibly fun and the kids were amazing. Both Isabel and Gus were in the production. . . but Gus was adamant that he would NOT go on stage until the very last moment, when he went out there and was a huge ham!

Above is a photo of him as one of Fagin’s gang of thieves, during a musical number.

Cute, right?

But all I can see when I look at this photo is the fact that all of his friends have their hands above their heads (as choreographer dictated) and Gus could barely raise his hands above his ears.

I know this makes it seem as if I am focusing on the negative. . . he had a great time during this production and felt a huge sense of accomplishment being on stage. . . but this tiny little difference shown in the photo feels like the beginning of the end.

Next year. . . will he even be able to walk on stage? If he’s in a wheelchair, will be even be able to participate and will he WANT to?

For this reason and many more, is why I am trekking to Everest Base Camp in October. To raise awareness and money for this horrible, devastating, life-taking disease that is haunting my son and my family everyday.

Every morning I wake up and hope that Gus is not weaker than the day before. . . every night when I put him to bed, I pray that he will be able to get out of bed the next morning with out assistance.

But even tonight, as I went to kiss him, he wanted a drink of water. I got it for him, and he said, “Help me sit up, mommy.” My heart broke for the 100th time this week.

We are determined to find a treatment or a cure for Gus and thousands of kids just like him. Please help if you can and donate to our Everest to End Duchenne campaign. We promise that every dollar will go to promising medical research. Thank you so much!

I just did some math

I just did some math

Dear friends,

Thank you to all who have donated. I am about a third of the way to my goal! Last week I saw an orthopedist and was told that I have bursitis in my knee and a possible meniscus tear (an MRI will determine). So I have been wearing a ridiculously uncomfortable brace, feeling slightly depressed, and walking instead of hiking for the last 10 days.

Tomorrow I am going to attempt to resume my hiking schedule. And still, this discomfort that I’m feeling is nothing compared to what boys with Duchenne face everyday — extreme fatigue, muscle cramps, stomach issues due to meds, mandatory stretches 2-3 times daily, the psychological effects of never being able to do the things their friends can do, the wheelchair, the endless doctor visits and pokes with needles, upwards of 10 pills a day…these things and more are what my little boy faces every day.

I am more determined than ever to climb to Everest base camp for him and all boys with DMD and raise some serious money for research in the process!

I just did some math…I need $6290 to reach my goal and I have 486 Facebook friends. If everyone of my FB friends donates just $13 each, I will reach my goal. THIRTEEN DOLLARS!! Can you help? Can you spare $13 for this sweet face? Thank you so much in advance!