On the 3rd of October myself and Phil will be running the London marathon in aid of wish for William. Please read below about this local boy and let’s get behind this local family.  Our training has already started and you’ll see us training around looe. 

Please give us a shout out as you drive by

The family would like to take  William to the NAPA centre in Boston which is a 3 week intensive, the cost including flights and accommodation would be approximately £11,000. The therapy intensive would be 4 hours a day, 5 days a week and would be a combination of physical, occupational and speech therapy.
Hello everyone, my name is William. I am coming up to 3 and live in Looe. 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.

Thank you
Love William xxx