What's next for Kevan?
"Now, we are ready to explore another part of the wide world -- China," says Kevan. "We are excited to partner with Show Hope on this adventure. Show Hope is an organization that serves orphans with disabilities, with care centers set up throughout China. Our aim with visiting these care centers is to deliver our custom Deuter backpacks for their use, and to be an encouragement to the children, as well as the staff and their surrounding communities."
Backpacking through Europe took on special significance for Kevan Chandler. As someone with spinal muscular atrophy, the trip would not have been possible without the help and creativity of his friends. Leaving his wheelchair behind, the team adventure was made possible with Kevan in a retrofitted backpack allowing him to visit places in Europe that aren’t always wheelchair-friendly.
We first met Kevan at the Global Genes Rare Patient Advocacy Summit in 2017. He took a photograph in front of a collaborative art project we sponsored in which those with rare diseases, their caregivers, and researchers all contributed to create a giant puzzle; each piece was a chance to share a personal story or struggle.
Kevan was honored at the summit as a Global Genes Rare Champion of Hope for his advocacy work. His organization, We Carry Kevan, aims to inspire both disabled and able-bodied communities to re-imagine accessibility.
Kevan is also our special guest this year at our annual meeting where he will be part of a discussion about the “Patient Journey.”
We would like you to meet him:
What’s next for Kevan?
“Now, we are ready to explore another part of the wide world — China,” says Kevan. “We are excited to partner with Show Hope on this adventure. Show Hope is an organization that serves orphans with disabilities, with care centers set up throughout China. Our aim with visiting these care centers is to deliver our custom Deuter backpacks for their use, and to be an encouragement to the children, as well as the staff and their surrounding communities.”
Tell us a little about yourself.
My name is Kevan Chandler. I love old movies and older books. I’m 31 years old, an author, and I get my mail at a coffee shop in Fort Wayne, Indiana, where I spend most of my time.
What is Spinal Muscular Atrophy?
SMA is a rare neurological disease. My sister and I both have Type 2. Essentially, it interrupts the flow of messages from your brain to your spinal cord and back. So, it affects muscles with atrophy throughout the body. That manifests itself differently in everyone, but usually it takes quite a hold on your limbs. My sister and I are in wheelchairs, though she has use of both arms while I lost the use of my right in high school. Conversely, my lungs are stronger than hers, but she has better balance than me.
When were you first diagnosed?
Around the time you start walking as a baby – that wasn’t happening for me. My sister could stand and walk a bit while holding onto furniture, but I couldn’t pull it off from the get-go. Since she’d already been diagnosed a year or so prior, I was kind of an open-and-shut case for my parents and the doctors.
What is most challenging about SMA?
I think, for me, it’s the little things. I don’t care that I can’t walk or drive or shower myself. I’m surrounded by wonderful folks, I dance in my own way, and storytelling (my favorite pastime) doesn’t require anything but me and my words, so I’m pretty content most days. What does get to me, though, is that I can’t carry in the groceries for my mom or shovel my neighbor’s driveway. Nothing reminds us so starkly of our mortality than seeing the needs of others and knowing full-well how little we can help.
Have you ever participated in a clinical trial for SMA and if so, what was that experience like?
I have not participated myself, but my sister began Spinraza treatments this year. It was a profound struggle with a lot of pain and frustration at first, as the means of injection had to be reengineered, but the resulting growth in strength and stamina has been remarkable.
Are you optimistic about recent SMA research/treatment?
Sure! I’m excited to see its positive effects on my sister as she participates, and my hope is that it does provide relief for folks with SMA who go that route. Furthermore, my hope is that this relief and development of strength will foster a new sense of freedom both personally and communally, to interact with the world around them and ultimately experience life with others more richly than they ever before imagined.
How did the idea come about for your trip?
My life experiences have never been limited to my wheelchair, with amazing friends and family to make it so much more. I had some friends after college who would scoop me up and carry me wherever we were going without a second thought. This included carrying me in a makeshift backpack one night through the sewers of Carolina. After that, it was just a question of what’s next. After thinking through it a bit, I wrote to one of the guys, Tom, and said, “What if we do that again, but above ground for three weeks in Europe?” He was all in and the rest came together over the next twelve months until we finally sat on the floor in our Paris flat and took a deep breath. We’d made it, not by any means of our own strength, but our community and our good God working despite our limitations.
What was most challenging about the trip?
Pride is naturally a great challenge when you’re riding the back of another person. They want to go this way and you want to go that way. Sometimes you both need to communicate better, but more often, you both need to just get over yourselves.
It’s easy in these scenarios for me to think it’s all about me, but to counter this, my favorite aspect of the trip was that my friends and I were doing it together as a team. So, my agenda was important, but so was Philip’s and so was Ben’s, etc. We had to all give and take and consider one another for the best possible experience as a unit, and this route certainly proved the best, most rich and fun. But you still have that selfishness within, that voice in the back of your head you always gotta combat.
We stopped in Wales for one night on our way to Ireland. It was meant to be a footnote in the trip, a forgettable night of dinner and sleep before moving on. But the little ramshackle town was so charming and mystical to us, we all fell in love with it.
We found a hole-in-the-wall restaurant and made friends with our waiter. Great food, then a walk downtown gave us a sweet sampling of Welsh life. It was the night after a huge victory for them in the EuroCup, so celebration surrounded us. And we ended the night on a quiet dock.
Our posse of seven collected in the chilly dark, staring out over a fleet of silent, bobbing sailboats as far as the eye could see. We shared stories and laughter, gave toasts to our adventure, and I took in the quality time with my friends like a priceless, stumbled-upon treasure to dig up and hold close.
What do you want people to take away from your story?
I’m not sure it’s my place to tell folks what to get out of it, just to tell the story as true as I can and hope some piece of it resonates with some piece of their own stories.
Maybe they’re challenged by a new thought, or encouraged to know they’re not alone; maybe the “piece” in them has been heavy on their heart and is made light by my story; maybe it was buried deep, forgotten or unnoticed, and suddenly it surfaces by a word, called forth.
Whatever the case, I guess my hope is that readers, watchers, hearers, whether intent or in passing, will end up with peace at the end of the day. Sometimes that comes with the final puzzle piece fitting into place and sometimes it’s a long and hard road, but either way, it ends with a sigh of relief that passes understanding. My hope is that we can be part of their journey to that sigh.
What is the goal of We Carry Kevan?
Well, our mission statement says, “Believing in the inherent value of all people, We Carry Kevan mobilizes individuals with disabilities by redefining accessibility as a cooperative effort.” That’s the short version!
Our goal is to normalize this idea of accessibility being not about elevators and ramps, etc., but people helping people. This happens when folks work together from both ends, and take the terrifying but necessary steps together toward trust, selflessness, and creativity.
You refuse to be defined by your physical limitations—how do you maintain a positive attitude especially when society doesn’t always adequately accommodate those with disabilities?
When I was in high school, I was part of a prayer group that met before class. We would spend some time making a list of concerns as well as things we were grateful for. At the end of the latter, every time, my friend Jordan would add with a grin, “We are alive and have friends in Christ.”
No matter what is going on around me, no matter my blatant weaknesses or the frustration of my surroundings, I am alive and I have some amazing friends, and it’s all a gift from God because of his good love. That’s what keeps me up and going.
Who do you most admire and why?
In general, I really admire men who are good fathers and husbands; patient, kind, and wise. When I see a man whose wife and kids clearly know he loves them, and it’s life-giving to them, it makes me want to be around that guy and learn this great mystery. It’s like a key to the universe, really!
So, more specifically, I admire my own dad, whom I’m named after, and his father. I have a handful of mentors as well whom I admire for the same reason, great dads and husbands.
RARE DISEASES NEWSLETTER Volume 14, August 2019
Welcome to the fourteenth edition of the rare disease newsletter. This quarterly publication strives to keep you up to date on PRA’s Center for Rare…