George is one of the 100 babies a year born with Spinal Muscular Atrophy (SMA). Amongst other things, this means that George will never walk.
Our twin sons, George and Harry, were born the picture of good health. They both learnt to lift their heads, to smile and giggle, to roll over, to sit up and start to become mobile. Then Harry learnt to stand and walk, but George never has.
Just before their first birthday, George was diagnosed with Spinal Muscular Atrophy Type 2, something we had never heard of before. We were later shocked to discover that it was an incurable genetic condition and we were both carriers.
We soon learnt that 1 in 40 people unknowingly carry the faulty gene that causes SMA. Where both parents are carriers, a baby has a 1 in 4 chance of being affected. George’s consultant explained that we had just been extremely unlucky and that there was nothing we could have done to prevent this from happening. More information about SMA can be found on George’s website - www.aboutgeorge.co.uk
George is an extremely bright, happy and chatty boy. He still sits independently and uses his arms well but has little strength in his shoulders. He can no longer crawl and will never stand independently or walk. George’s immobility prevents him from doing most things that other toddlers do. He is desperate to explore and learn about the world around him and get up to mischief alongside his twin brother Harry.
Those affected by SMA Type 2 will never be able to lead a fully independent life and will have to rely on a powered wheelchair to get around. George has recently tested a ‘Snapdragon’ powerchair which enabled him to move around, go up and down and even to be held in a standing position. George would love to have a ‘Snapdragon’ so that he can interact and play with his peers and have opportunities enjoyed by others his age. Unfortunately a ‘Snapdragon’ will not be provided by the NHS and will cost us £20,045. This seems like an enormous sum, but can you put a price on the freedom to move?
Many of George’s friends and family are taking part in various sponsored events in the hope to raise enough funds to get George a ‘Snapdragon’ powerchair. To learn more about these events please look at the ‘latest news’ section of George’s website – www.aboutgeorge.co.uk
Donations made to the charity Turbo Trust will not go directly to George, but will also benefit others who require power mobility. However, the more money raised on George’s behalf, the more funds the trustees are likely to allocate to George. If you wish to donate directly to benefit George then please see the ‘donate’ section of George’s own website - www.aboutgeorge.co.uk
Please note: Gift aid cannot be claimed to benefit an individual so please bear this in mind when making your donation.