Healthy Living

On the Back of Friends: How One Man Travels the World with Muscular Dystrophy

On the Back of Friends: How One Man Travels the World with Muscular Dystrophy

Photo: Kevan Chandler. Source: WeCarryKevan.com http://wecarrykevan.com/

Everyone dreams of travelling the world at some point in life, and while this dream may envision backpacks, campfires, mobile speakers, inflatable mattresses and tons of supplies, very few people would dream of actually being backpacks on their thrilling adventure.

Some four years ago, one of such dreams was almost snatched from the heart of Kevan Chandler, who was told by a doctor that he’d have to remain on an oxygen machine for the next 180 days because of his muscular dystrophy.

Well... that doctor was terribly wrong. 

Kevan Chandler is a 30-year-old male suffering from the Duchenne muscular dystrophy (DMD), which is reputed as the severest form of muscular dystrophy, a condition resulting from the absence of the dystrophin protein that serves the function of keeping the muscle cells of the body firm and in place. DMD is a genetic disorder that primarily leads to the progressive muscle degeneration and weakness and is one of nine known types of muscular dystrophy conditions. The disease affects 1 in every 3500 males, and is usually severe, manifesting at ages as early as 4 years old, while following a rapid advancement of adverse changes that causes the overall health of the patient to worsen.

The condition will typically begin its symptoms with the loss of muscles in the hips, pelvis and upper region of body before advancing to other parts such as the thighs, shoulders and skeletal muscles in the upper arms, the legs and trunk. Patients who have DMD as children usually have to struggle with movement and standing, and the continued progression of the disease means that most kids are left incapacitated and unable to walk by the age of 12. The symptoms of DMD may also affect the cognitive and intellectual abilities of some patients and for others, the disease may affect the respiratory system and other vital organs.

As of now, Duchenne muscular dystrophy is currently incurable, and while the condition has condemned a sizeable number of people to physical disabilities and challenges, Kevan Chandler on the other hand has chosen to take a positive outlook of life despite his conditions and travel the world with a number of friends. The 30-year old DMD patient who moves around with a wheel chair finessed a grand plan that sees him strapped to the back of his friends with the aid of a customized pack as he moves around the European continent.  

The backpack story

The 65-pound Chandler and his friends intelligently innovated and designed a backpack in the wake of a moment where Kevan had decided to join his friends in the sewers of Greensboro, North Carolina, an area that was not accessible with the use of a wheel chair. The friends put the pack together in about an hour, constructing the genius piece in the form of a hiking backpack featuring a metal frame.

“We actually laid it on the ground, and they laid me on top of it, using hammocks," Chandler said

It worked, and the pack sparked a new-found confidence in this would-be traveler.

"If we can do this, what else can we do?" he wondered. The answer was "the world."

The backpack and ultimate conveying equipment for Kevan features a special headrest, a saddle and padding to make the journey as comfortable as possible.

Achieving the dream

Kevan Chandler and his friends Tom Troyer, Ben Duvall and Phillip Keller set up a Gofundme page to assist the finances and provisions for their journey to Europe, which took off on June 19, 2016. Luke Thompson was also with the group filming the adventure of a lifetime. The trip will be the group’s second expedition following the Carolina experience of 2013 and Chandler’s choice of destinations is strongly based on the fantasy writer’s ancestral roots, heroes and role models.

First up is the Samois-sur-seine in France, which once served as a home to Django Reinhardt, a guitarist who established a new style of jazz music after he had deformed and burned his hands in a fire incident. Kevan explains that his adventure with the guitarist goes back to high school around the time in which the symptoms of DMD and weakening of his own hands had just begun. The 30-year-old also explains that much of his fortitude comes from his older sister Connie, who shares a similar condition, and his friends who have put in a lot to make most of his dreams come true. He also explained that his friends were totally committed and willing to make the trip happen, adding that “they had wanted to serve him in that way”.

Kevan and his friends weigh into the experience, explaining that the trip was brilliant and fun-filled, while Philip also explained that the task of carrying Kevan was actually more difficult that originally envisioned. Philip joked that initially the thought of Kevan’s 65lbs weight made it seem like a fairly simple task, but the fatigue wore on as the journey extended.

The group has founded the “We carry Kevan” NGO upon the return from the European tour and are developing the concept of the backpack to aid many others like Kevan and people with some form of physical disability to rethink and broaden the concept of accessibility to improve the quality of life. The NGO is currently working alongside the Deuter sport GmbH to create a new innovative backpack that will serve the specific purpose of carrying disabled individuals and will be fashioned and modified from the original pack used by the friends. Furthermore, training is being provided by the “We carry Kevan” for the care teams that will be invested in mobilizing disabled folks to guarantee the most effective and safest experience that can be achieved.   

The Kevan Chandler story reiterates that with the right amount of love, care and value for life, patients suffering from terminal illnesses can still get to experience high quality of life and as such, we certainly agree with our friends at www.wecarrykevan.com that “There is no I in Kevan”.