Rob’s letter

I was ill, losing my mobility and unable to go home. That’s when Dorothy House gave me a room to call my own and cared for me for 11 weeks. They saved me at the worst moment of my life. Today, I’m supporting Katie – one of the amazing nurses at Dorothy House – in her appeal to you for new equipment for their Inpatient Unit, giving terminally ill people like me a better quality of life.

I was diagnosed with Motor Neurone Disease in February 2018, when I was just 33 years old. I’d been having trouble getting my left leg to do as it was told – and went in for some tests. My wife Sam was next to me, pregnant with our child, when I was told I had this life-shortening illness. It was like they said “Here you go – massive bombshell!” and then left us to it.

A few months later and I had gotten a lot worse. I could still stand and bear my weight, but I needed a sturdy walking frame. We were living in a rented place and I just couldn’t manage the stairs. A local housing association helped to find us a new-build house; but by the day we were supposed to move in, we found it was still far from complete. The floors hadn’t been laid and lots of work was still needed to make it accessible. I was basically made homeless overnight.

That’s when Dorothy House saved us. I’d been in to see them a few times, just for the day, and I loved the atmosphere, the positivity of everyone there. When the nurses heard what happened they said “Don’t worry – you can come here!”. I went in thinking it’d be a week, maybe two – but in the end I was there for almost three months, waiting for the new house to be ready.

Room 3 in their Inpatient Unit became my home – and my family’s living room. I was worried our young kids would be too noisy, but the hospice team was completely relaxed about it and made everyone feel really welcome. It meant I could have my family with me every day, have cuddles with the kids and read stories to them just like I was at home.

I spent a lot of time in bed. There was a recliner chair next to it, but it was an old model and not really right for me – when it reclined I kept feeling like I was slipping out. They found a better one for me from their Day Patient Unit which made a huge difference, because I wanted to be out of bed as much as possible – especially when the kids were there.

The furniture they had around me was fine, but you could see it was getting old and tired. They had this amazing Dyson fan they let me use, which was brilliant for me because my condition makes me overheat all the time.

I’ve seen the Wish List Katie has put together and I completely understand why she needs these things. When you’re in one of their rooms you’re probably not able to move around too much – so having the right equipment and furniture makes all the difference. I’ve been fundraising for Dorothy House since I first met them and I’d like to think that this appeal could raise the money Katie needs to buy a new chair and bedside equipment for every room.

There’s a good chance I’ll need to come back into Dorothy House at some point this year. It would be amazing to have a new chair to sit in and a new fan to cool me down – but actually the most important thing for me is to know that these things will be in place for people who need to come in to the hospice after me. Helping to buy the things on this list will be my contribution to a charity that’s already done far more for me than I could have ever expected – and my personal legacy to my community.

Please, do what you can to help. Thanks so much.

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Rob Rayner

Click here to donate to the Comfort and Dignity appeal