Hello everyone, my name is William. I am 6 and live in Cornwall. I was diagnosed in August 2018 with a very rare genetic condition called Allan-Herndon-Dudley Syndrome (AHDS). It is so rare that it is basically unknown to most medical professionals. It is estimated that approximately 320 boys are living with AHDS around the world.

This condition means I have a mutated gene which didnt allow thyroid hormone to access the nervous system from before birth, causing global developmental delay, meaning I am unable to sit, stand, walk, crawl, roll or even support my own head for longer than a few seconds. I am also non verbal and am registered as partially sighted.

In spite of my condition, I am a happy, sociable little boy who without realising it faces and copes with so many challenges on a daily basis.

As Im growing I am becoming a tall, heavy boy and so, as I cannot support myself its becoming essential that I am hoisted. It is also becoming more difficult for my mummy and daddy to carry me up and down the stairs.

Due to this we are currently in the process of creating an extension which will consist of direct level access into the extension, wide hallways and wide doorways, a fully adapted bedroom, wet room and therapy and sensory room, all with hoisting systems in place and specialist equipment. This will enable me to live a more comfortable and accessible life, making life a bit easier for me and everyone involved in my care.

Any contribution will be gratefully received and will make a huge difference to my care.

Thank you

Love William xxx

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