Georgie's Story, please support.

My cousin Georgie is a 32 year old man and is married with two children. He was diagnosed as a child with Charcot Marie Tooth which is a progressive neurological disease which affects his hands and legs. This progressive disease deteriorates your muscle tissue and affects most aspects of everyday life. Tasks which most would not think twice about, for example buttoning a shirt, putting socks on and tying shoelaces, are tasks that my cousin can no longer do. Georgie has no feeling in his arms, hands or below his knee in his legs. He depends heavily on his wife and family, his walking is now very limited and he is very prone to falls and he now has been assigned a wheelchair. He purchased an apple watch which has an alert (SOS) which he can use when he has a fall, and sadly he has used it more often then we would like which allows us to know when he is on the floor and we can travel to him to pick him up.

Georgie has now accepted that his condition has become unmanageable and has finally asked for help, the main barrier is his front drive which is very uneven and is causing him to have many falls to the front of the property. Another main issue is his personal care and he now has to rely on his wife to support him when using the toilet. He has had a visit from the Bromley council Occupational Therapist who agreed that he would benefit from a self cleaning toilet and also made many property adaptation recommendations that they felt would boost his quality of life as his condition worsens. OT also agreed that the drive was very concerning and a huge health risk.

My cousin has worked full time since leaving school because he wanted to maintain his independence and provide for his family. After nearly a year of battling, the London Borough of Bromley OT confirmed that as he ‘earns’ he is expected to find the first £27,500 towards any adaptations that would need doing.

However was told, if he gave up work, all of these barriers would be removed and adaptations will be free (paid for by the Government), but he is determined to continue working as he is able to at this point in time. The system is seriously failing him. If he was to give up work and rely solely on benefits, this really would be detrimental to his mental health. He takes no benefits with exception of his higher rate disability allowance which goes towards his Motability vehicle. He pays full rent and his earnings cover his everyday living expenses with no additional funds for savings. His wife works part time and takes care of him and their two children.

Georgie is a proud man who has struggled to accept his condition for a number of years and now to finally accept it and realise that the help is not available to him, it’s been both a mental and physical struggle which has hit the family hard. He has looked into getting a loan but because of his progressive medical condition the bank feels he is a high risk and declined him.

He wants to be a role model to his children and show he can continue to work on. Therefore we are creating this page to not only raise funds to help him in his everyday life, but to raise awareness of this rare condition CMT.

We are creating this page to raise money for these adaptations which would benefit Georgie's life hugely and allow him to continue working, keeping his mental health a priority. The current £7,000 target will be put towards purchasing a self cleaning toilet so he no longer needs to rely on others to use the bathroom, this is the priority at the moment. If we are lucky enough to reach over £7,000 the additional funds will be used to implement the additional adjustments that the OT have recommended. Anything put towards this fund would be greatly appreciated and we thank you for your time in reading Georgie's story.