Rare Disease Report

The Spinal Muscular Atrophy World Traveler

NOVEMBER 22, 2016
Andrew Black
There is no I in team, nor is there an I in Kevan. But spinal muscular atrophy (SMA) patient Kevan Chandler does have a team of friends that are helping him travel Europe on a trip dubbed “We Carry Kevan”.
As many SMA patients experience, a wheelchair soon becomes the only way of getting from point a to point b. "We Carry Kevan" started off as a simple acknowledgement of many places not being wheelchair accessible, and was turned into an innovative and adventurous lifestyle.
Kevan wanted more for himself than to be bound to his wheelchair and going only where his disabilities limited him too. He knew he couldn’t do it alone. While one day he and his 4 friends were all together, they came up with an extraordinary solution to give him exactly what he wanted.
To help Kevan be able to backpack around the world, Kevan became the backpack.
Together, they designed a backpack that allowed Kevan to strap into with feet and arm holders and even a neck rest to keep his head up, and started the “We Carry Kevan” movement.
 Each member of the traveling friend group takes turns carrying 65lb Kevan to each destination, giving him the chance to go to places often inaccessible to wheelchairs.
Traveling to places like Paris to see the Eifel tower, hiking the English countryside and adventuring through Skellig Michael, Kevan is building an impressive resume, while also inspiring others to help those who are limited as well.
Seen on We Carry Kevan’s Facebook page, are reposts of other families inspired by Kevan and his friends and doing the same with their children with similar disabilities, carrying them and giving them the chance to see the world they might have never been able to see.
Kevan is even writing a book about his experiences.
We Carry Kevan’s social media popularity is continuously growing, with over 12,000 Facebook likes and videos hitting thousands of views. (see below).

To learn more about Kevan and he and his friend’s adventures, visit http://wecarrykevan.com/

About Spinal Muscular Atrophy

SMA is a genetic condition that leads to a deficiency in the spinal motor neuron (SMN) protein as a result of mutations of the survival motor neuron 1 (SMN1) gene. The severity of SMA correlates with the amount of SMN protein. Generally, the muscles most affected are those near the shoulders, hips, thighs and upper back. Muscles used for breathing and swallowing may also be affected. Infants with Type I SMA produce very little SMN protein and have a life expectancy of less than two years. Children with Type II have greater amounts of SMN protein but still have a shortened lifespan and are never able to stand independently. Children with Type III have a normal lifespan but accumulate life-long physical disabilities as they grow.

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