When Jill Castle’s son, Anthony, 14, asked his mother to help him cross off an item on his bucket list — he wanted to hike into the Grand Canyon— Castle didn’t hesitate. On its face, this might seem like a relatively easy request. Anthony, however, has Duchenne muscular dystrophy (DMD). According to Castle, DMD is “the most common fatal genetic disorder diagnosed in childhood,” and life expectancy is “approximately 20 years.”
Around the time Anthony transitioned into a wheelchair, the nonprofit organization Daring Adventures came into the Castles’ lives. “I realized they were the perfect teammate to make this happen,” Castle says. On May 3, Anthony, with the help of several volunteers and his family, will descend the Grand Canyon. Below, Castle talks about their upcoming trek and how it has transformed them both.
Why did Anthony want to hike into the Grand Canyon?
I think for him, it was really simple. He just wanted to get to the bottom — to get into the Colorado River and see the wonder of the Canyon.
When Anthony asked you to help him climb into the Grand Canyon, what was your response?
I was excited, because I love adventures, and I even love what others say can’t be done. This is one of many things we have done that folks said we couldn’t. We find it fun to be the exception. However, looking realistically at the place we are in, with Anthony transitioning off his feet, I was afraid I wouldn’t have the energy to coordinate this. But the more excited he got at the possibility, the less I worried about me.
What’s going through Anthony’s mind as he gets ready for the hike?
I think he’s really tickled that so many are supporting this. He is always asking me why people keep helping, and does that mean everyone loves him? Then he just smiles really big.
Talk to us about the training regimen. What’s involved, and how is Anthony preparing himself for this challenge?
We have been hiking every week for the last few months. We are carrying him at least 7 miles every time we hike, but I’m still not sure that’s enough. I think everyone is training on their own as well. I know I am. Most everyone on the carrying team is either an elite athlete, a world-class hiker or a fire-department search-and-rescue worker. All that’s left is the family. Anthony’s dad is carrying, and his fiancée, Dee Dee, and I are in charge of trying to keep up to take care of Anthony. There will be two EMTs on the trip, but he needs to be adjusted and stretched every 20 minutes or so, as well as kept hydrated and fed. Dee Dee and I will alternate, keeping up with the crew so there is always one of us with him. My other son, Oliver, is going as well and although he seems so much more mature, he is only 12, and this will be challenging. My boyfriend, Doug, will help take care of him as well.
Anthony does know it’s going to be hard. He is working on communicating his needs, which can be challenging for him. He knows that’s his job. He is also being very dedicated to his regimen this month prior, with stretching, meds and nutrition. He knows we can’t slack at all.
How will Anthony get down into the Canyon?
We will carry him in a custom chair called a Safari Chair. Mike Box made it for Phoenix Adaptive Recreation, and Daring Adventure now owns it. It has been customized for Anthony, but it is light and has wheels with poles to pull like a rickshaw. When the terrain gets too rough or too narrow, then the wheels clip off, the poles slide back and he is then carried like a pharaoh. He loves that, and it suits his little attitude. There are 10 sets of two carrying him and alternating approximately every 20 minutes. We will have a fresh changeout team at the halfway point: Indian Garden Campground. We estimate with the crew, it will take 10 hours to get him out.
How many people will be helping you on this adventure?
We have 19 staying at the bottom that will be part of him getting down, running the camp once we are down there and starting the trek out. We have another six who are so fit, they are able to come up and down as needed within the days. And we have another six staying at Indians Garden Campground for the halfway changeout. We also will have a “base camp” on top to support everyone and provide a nice meal when we make it up. I believe there are about 10 folks there. Lastly, there are quite a few family and friends coming to day-hike down as far as they can and walk out with him.
It seems like preparing for this adventure has given you a lot of time to think. On your blog, you talk about hope, humility and self-compassion. What has been going through your mind as you prepare to descend the Canyon?
The Canyon is a perfect metaphor for DMD. There are a lot of challenges and fears, but a ton of joy and love. When you have a child with this condition, you have to pace yourself and condition for the long haul. The journey can be unbelievably painful and unbelievably joyful; self-discovery is just moments later. I think in order to not just survive, but enjoy both endeavors, you have to be able to be open to what you are learning, accept help and stay connected to the moment. In the Canyon, no matter how painful or hard it gets for me personally, I will be thinking of my sons and how my strength and perseverance will give them comfort in their time of need. That is the same goal I have in DMD with regards to our family. My boys see me in pain, cry, be honest and ask for help when needed. But even more importantly, they see me regroup, get back up and keep going with a smile on my face. If they never saw me struggle, they would never learn how to get back up. They see me being hopeful that the joy will always compensate for the pain, and I believe, on a smaller scale, that will be exactly the case in the Canyon. In our journey in DMD, as well as into the Grand Canyon, we want to show everyone that to experience the good stuff, we must focus on what we can do, not what we can’t — regardless of what we think our limitations are. There is always something to be grateful for, and we are responsible to find it.
How can folks help out?
They could donate to our fundraiser at www.youcaring.com/anthonysdaringadventure. They can also donate any supplies we may need for the climb in and out. We are looking for sponsors for food, gear and any other help folks would like to provide.
For more information about Anthony’s trip into the Grand Canyon, visit: https://www.kickstarter.com/projects/1167227199/anthonys-adventure-a-documentary-film.