Hello,

I’m Sarah. My husband, Danny, was diagnosed with motor neurone disease (MND) in March 2025. At the time, he was 39 and our boys, were 3 and 1.

MND is a significantly life-shortening neurological condition that causes motor neurones to stop working. It causes messages to stop reaching muscles and leads to increased weakness and paralysis. There is no cure.

It has been incredibly difficult coming to terms with Danny’s diagnosis but we are trying our best to navigate life with his terminal illness. In such a short time, Danny’s condition has progressed much quicker than we have been prepared for and we are continuing to face many challenges.

Our home is far from accessible, and Danny can no longer care for himself or use the stairs. He needs access to a private space downstairs to accommodate a wet room and specialist equipment to support his changing needs.

We do not have the savings to afford the adaptations Danny needs. I have spent months pleading with our local council, hoping they will use their discretion to contribute funding. Danny is trying to work for as long as possible as this is a distraction from MND, but this means the council will not help us. I have desperately researched other possibilities too, including applying for DIY SOS, but all efforts have been unsuccessful. Our final option is crowdfunding.

Having the necessary adaptations will drastically improve our living situation, and will allow us to be as prepared as we can be as Danny’s health continues to deteriorate. We desperately want to stay in the family home that we have worked so hard for, and where we can focus on making precious memories in the time we have together. This will also provide Danny comfort, and all of us some familiarity and normality during such a devastating and uncertain time.

Every contribution, no matter how small, will make such a meaningful difference to our family. Any support or sharing of this page is truly appreciated.

Thank you for taking the time to read our story.

You can find out more about MND, the work towards a world free from this cruel condition and the ongoing campaign for better public services at the following link: https://www.mndassociation.org/