The story of George
Hello my name is George. I am 4 years old and I have a rare syndrome called CTNNB1. It’s a genetic mutation on the CTNNB1 gene. I cannot walk, talk or do anything for myself. I also have hypotonia, global development impairment and a double bilateral squint in my eyes that I had surgery on. I need 24/7 care from my mummy and daddy. I enjoy my specialist school in hull and I have a smile on my face all the time. I have the cheekiest little laugh and despite all the things I can’t do I am the happiest and most loving little boy. My syndrome is so rare there’s only 300 of us in the whole wide world! Not much is known about by syndrome so my mummy and daddy try to raise as much awareness as they can. I will probably never live an independent life but I have the best family who love and support me. Thankyou for listening to my story. Love George ❤️