My daughter, Ellie, is 15 years old and has CMT, a manageable but frustrating muscular wasting condition. Ellie has recently started wheelchair rugby and wheelchair racing. She also competes in Boccia. She is also a member of a special needs netball team. Some of these sports require specific types of wheelchair built for the sport, which are kindly loaned to her. However, her everyday chair is a standard NHS wheelchair which is heavy. Because of Ellie's muscle wasting condition she needs to have a much lighter wheelchair. This would give her a whole new freedom when out and about.
I'm no stranger to adrenalin related challenges. Back in 2012 I took on a list of 50 challenges to complete the a year before my 50th birthday. One of the items on the list was 'Write a book' which I successfully completed in 2012 and published in 2013 reaching number 9 in the Sunday Times Best Seller list. The book is called The 50 List and published by HarperCollins
The challenge is for me to ride Europe's longest zip wire and the worlds fastest, clocked at over 100mph.
Ellie needs a light weight wheelchair similar to this
The target amount to raise is £2000 which will be used to purchase a wheelchair for my daughter Ellie, similar to the one shown here.
What Is CMT?
CMT (also known as Charcot-Marie-Tooth disease, also known as hereditary motor and sensory neuropathy), is a wastage of the muscles in the lower part of the arms and legs because the peroneal nerves, which are the nerves that extend out from the spinal chord to the lower extremities, aren’t telling the muscles what to do. This results in muscle wastage. The muscles themselves are ok but if they’re not getting any signal from the nerves the muscles will eventually waste away.
I can no longer walk and use a wheelchair all the time. Ellie can still walk but fatigue can set in quickly and she is having to use the wheelchair more and more. It also affects the dexterity in the hands making the handling of objects difficult.
For more information visit the CMT UK website.
How You Can Help
We are looking for sponsors to help us fund this event. We're estimating around £300 to cover travel, somewhere to stay and the cost of the challenge. If you would like to get your business name on the website and mentioned in any press releases then please do get in touch.
We are always trying to raise awareness about the condition and so I would ask you to share this website with your family and friends.
Any and all amounts would be very much appreciated. Visit our website at http://zippingforellie.co.uk