Tuesday 22 March 2016

Spinal Muscular Atrophy

Kevan Chandler is a young American man who is diagnosed with Spinal Muscular Atrophy.
It is a genetic disease that affects the part of the nervous system which controls voluntary muscle movement.
Most of the nerve cells control the muscles in the spinal cord.
The muscles are unable to receive signals from the nerve cells.
The muscles, due to being inactive, get smaller.

Everyone has a dream and despite being wheelchair bound, Kevan's dream is to go backpacking!

Life is not a competition, there is room for everyone to succeed and with the help of Kevan's true friends, they show their support to one another, so incredible things can happen, such as travelling around Europe "backpacking with a difference".

One of Kevan's good friends Tom Troyer kindly agreed to the following interview so as to raise awareness of Spinal Muscular Atrophy and to ask the public, near and far, to show their support by making a donation to the fundraising page on the Go Fund Me link via the website www.wecarrykevan.com

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WHAT IS YOUR NAME AND AGE?
Tom Troyer, 29 in April

YOUR FRIEND KEVAN IS DIAGNOSED WITH SPINAL MUSCULAR ATROPHY, HOW OLD IS KEVAN AND HOW DOES THIS CONDITION AFFECT HIS DAILY LIFE?
Kevan is 29 and he needs assistance with almost all daily activities that can't be done with an iPhone or performed by the turn of his wheel chair's controls.
He has use of one hand.
He has chosen professional goals that match his intellect, wit, and ear for detail...which are largely unaffected by his condition.
He is an author and sound engineer."

YOU, PHILIP KELLER AND BENJAMIN DUVALL INTEND TO TRAVEL AROUND EUROPE FROM JUNE 19TH - JULY 8TH AS "BACKPACKERS WITH A DIFFERENCE" BY CARRYING KEVAN ON YOUR BACKS, WHAT TYPE OF BACK PACK WILL YOU USE?
We will use a Dueter Kid Comfort III which we tried out at REI.
We will have a local company help us with some specific modifications to improve the weight capacity and durability of the pack.
Hudson's Hill is a denim and leather shop in Greensboro...they're pretty sharp fellows.

WHERE IN EUROPE WILL YOU TRAVEL AND WHY?
We will travel to Paris, Smois-sur Seine, London, and Skellig Michael.
Kevan wants to visit Samois Sur Siene to see the winter home of Django Rienhardt. Django has been a long time inspiration for Kevan.
This part of our trip will be a pilgrimage of sorts to pay homage to a historical figure who achieved so much despite physical limitations.
For those who don't know Django's left hand was damaged in a fire and he played guitar with really only two fingers.

LUKE THOMPSON WILL BE FILMING FOR A DOCUMENTARY, WILL IT BE ON TV?
The documentary will be used in a lot of ways but we are unsure if TV will be a possibility yet...although that sure would be nice.

YOU HAVE A FINDRAISING PAGE, WHAT WILL THE FUNDING BE USED FOR?
HOW/WHERE CAN THE PUBLIC DONATE?
The fund raising page is a www.gofundme.com page and is linked through our website: www.wecarrykevan.com.
The funds will be for airfare, lodging, transportation in Europe, a stipend for the caregivers (roughly minimum wage) and of course food.

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