Please make William’s wish come true by helping him achieve everything that he can in his life. He may have a rare condition but with your help and his determination anything is possible.
Hello everyone, my name is William. I am coming up to 3 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 that I have a quirky gene that makes my muscles weak and underdeveloped resulting in me being very limited in what I can do. I am making slow progress because I am very determined but also because I have started on a trial drug called Triac. I will, however, need constant therapy for the foreseeable future to help me get to where I need to be.
Unfortunately, these therapies aren’t free, or cheap but I would love to be able to access more physical, occupational and speech therapy. including an intensive course called CME MEDEK which is to help children with gross motor and global delay.
Any contribution, no matter how little, could make all the difference.
Love William xxx