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 and he advised us that based on the rate of progression to date his best estimate was that Alex had 12-18 months to live. Now, February 2020 we are 4 months further along that journey.
Alex is now only able to walk a few steps, none un-aided, his hands have weakened considerably and his whole body is affected. We are awaiting delivery of an electric wheelchair which will be essential for daily life.
Thanks to a combination of our exceptionally generous friends and family, and the MNDA, we have been able to make some adaptations to our home and buy some equipment and aids to make our lives together as a family in these precious months slightly easier. Every day is a challenge, but not having to go further into debt and having a pot we can dip into for incidental expenses has made a huge difference to our lives.
We do now have an adapted bathroom and a stairlift.
However, we now need to consider a Wheelchair Accessible Vehicle (WAV) so that Alex can continue to attend medical appointments but also to get out and about with the kids. The best way we have found to do this is to use the Motability scheme which makes it affordable but, we have to find a deposit, the deposit for a used suitable vehicle is £1600.
We would also like to go on a family holiday together, we are fairly limited with options as we need adapted bathrooms and wheelchair access, Alex would love to swim in the warm sea again. We'd really like to go to Lanzarote to Club La Santa (https://www.clublasanta.co.uk/hotel-booking/for-disabled/) where they have fully adapted facilities and are used to para-athletes. We estimate the cost to be in the region of £5000.
Finally, we need to move rooms around at home and we'd like to decorate but Laura is struggling to find the time and do this alone, so we need about £500 for a decorator ideally!
Any money raised goes directly into a separate account that we only use for things for Alex or what we have told our supporters. We are hugely grateful for your support so far.
- Caroline Scrase
- Like the Wind Magazine
- Valentin Jacquemin
- Vicky Dickson
- Aoife McCarthy
Fundraising team: Alex vs ALS (2)
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more