Story
Please make Williams 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.
On Sunday the 6th December myself and partner Ash will be running 26.2 Miles in the Virtual València Marathon to raise money for our nephew William. There is no doubt that this will be the most challenging thing that we have ever done, but this is not even comparable to the challenges that William undertakes on a daily basis.
For those of you that don’t know William was diagnosed in August 2018 with a very rare genetic condition called Allan-Herndon-Dudley syndrome (AHDS). It is estimated that approximately 320 boys are living with AHDS around the world, it is so rare that it is unknown to most medical professionals.
This condition means that William has a quirky gene that makes his muscles weak and underdeveloped resulting in him being very limited in what he is able to do.
William is the most determined and happy little boy we have ever met and is making slow progress which is incredible to see, making us all so proud. He is currently on a trial drug called Triac. However, he will require constant therapy for the foreseeable future to help him get to where he needs to be. Unfortunately, these therapies aren't free, or cheap but are hugely beneficial to Williams progress and wellbeing.
We know times are hard so we really appreciate any contribution that you are able to make.
Thank you for taking the time to read this, we appreciate your support and generosity.
*Update* We will now be running the marathon virtually in the UK due to COVID-19 restrictions. Details of our route will be posted closer to the time for anyone that wishes to come and cheer us along.