Alex vs ALS

Alex was diagnosed with ALS (also known as Motor Neurone Disease or MND) in May 2019 after noticing an issue with his leg and foot over the previous 18 months which had got worse. Before that he was exceptionally fit an healthy.


There is currently no treatment or cure for ALS, although there are some promising trials and a lot of research is being done right now.

In October 2019 we met with Professor Turner in Oxford who is a leading specialist in ALS advised Alex that based on the rate of progression to date his best estimate was that he had 2 years to live. Now, March 2021 Alex is 18 months along that journey.

Alex is now unable to walk or use his hands and is completely dependent upon others. He has to use a wheelchair and cannot now control that himself.

Thanks to a combination of exceptionally generous friends and family, and the MNDA, the family were able to buy a stairlift and adapt the family bathroom in December 2019 which kept Alex living a relatively normal life at home.


Due to the Coronavirus pandemic, plans for family time and fundraising were quashed in 2020 and as Alex was advised to shield he has lead a very limited life. Alex has now reached another milestone in his journey and been advised by healthcare professionals that it is no longer safe to use the stairlift (it is also very difficult and tiring), and the bathroom is so small and awkward it is very difficult for the carers to wash Alex in the current set up.

Laura and Alex with a team of professionals have decided to the best way to ensure that Alex is able to stay at home with his family is to build an extension to the rear of the property to provide a downstairs fully wheelchair accessible bedroom and wetroom. This will also mean he can continue to fully interact with the family, access the garden and be involved in day to day family life even if he is confined to bed.


Mendip District Council have agreed to part fund the work with a small emergency grant but it is not cheap! The only way for Laura and Alex to fund the work presently is to borrow against their house however, they are concerned about going further into debt and the future, especially to provide for their children, who are 10 and 12.

The current estimate is around £50,000 not including flooring and decoration.

Every pound raised here will go directly towards funding the extension and is a pound less that the family will need to borrow. All funds go to an account set up solely for the purpose of covering the costs of things that are needed for Alex and anything left in that account will go to the children to help them in the future.

Please do give a little if you can, even £5 will make a big difference.