Our twin boys, George and Harry Lockley, were born on 28th January 2011. They were both perfect.
As they grew, George and Harry passed all their checks and they both met each developmental milestone. 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.
George is an extremely happy, bright 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.
At the moment George is able to self-propel using a specialist indoor manual wheelchair which is extremely lightweight. This means he is able to independently move around, access activities of his choice and interact more easily with Harry and his friends. With the help of leg supports (KAFOs) and a frame, George is currently able to maintain a standing position and therefore experience the world from a different perspective.
George and his twin brother Harry
George and Harry are incredibly protective and fond of each other. We are amazed at their understanding of each other’s abilities and limitations at such a young age and their kindness and support for one another.