Dawn, who is married to Will and mum to four-year-old, Abigail, said, “I started experiencing symptoms three months after Abigail was born in May 2013. My legs were weak and I would fall over often, even down the stairs, and would be unable to get up off the floor. I thought it was something to do with just having given birth, but when I talked to friends and family I realised it wasn’t normal. Then in August 2013, when I was at the Highland Games with my family, I collapsed, and knew I needed to get checked out. The doctors initially thought it could be anaemia but after lots of testing they still couldn’t figure out what it was.”
In January 2014 Will started to notice a problem with Dawn’s breathing. He said, “I spotted it before Dawn did. I could tell her breathing wasn’t great because I could see when she was sleeping her whole body seemed to be working extra hard just to get air. Then she would be so tired the next day because she obviously wasn’t getting enough oxygen to help her sleep. At this point she was sometimes trying to sleep for up to 18 hours a day.
“Once our GP had ruled out anaemia and other theories, Dawn was referred to a neurologist. As soon as the neurologist saw her she immediately sent hospital for tests. I think the doctor knew even at that stage that it was MND but couldn’t officially say. Then, by a stroke of luck, when Dawn went to the hospital, the doctor who admitted her spotted her breathing issues and got her onto a respirator before anything else - it turns out Dawn was in respiratory failure at that point, so it was a very fortunate coincidence that the admitting doctor spotted this. When I saw Dawn she had tubes coming out all over the place. It was really scary seeing her like this but actually it was a godsend because the transformation was immediate.”
Dawn said, “I now have tubes in my nose and an oxygen tank with me permanently. The machine actually does the work of my lungs so that I can breathe - my lungs and chest muscles are now so weak that I cannot breathe on my own. The difference this had made has been life changing. Will and I noticed a huge improvement literally overnight. I now have much more energy because I’m sleeping better – which I need with a toddler in the house!”
Dawn, who was a care assistant for people with learning disabilities, stopped working just before having Abigail. Will developed video games for a living but gave up his job at the start of 2014, to care for Dawn and Abigail full-time.
Within the first year of symptoms Dawn was bed-bound. She could no longer get up the stairs and had to sleep in their living room. Dawn said, “One of the most difficult things has been losing my independence. I can’t go out on my own, look after my daughter or even make myself a drink. I am extremely lucky to have Will and the rest of my family.
“Six months after Abigail was born, I couldn’t look after her myself anymore. It’s heart-breaking. Now she will ask questions like, “Why can’t you use your fork properly, mummy?” or “What’s wrong with your legs?” She doesn’t fully understand but she knows something is wrong, even though it’s all she’s ever known. We can’t think ahead too much – as cliché as it sounds, we are taking it one day at a time and enjoying every moment as a family.”
After the official diagnosis in September 2014, Dawn and Will started attending MND Scotland’s support group in Dunfermline, and began using other services offered by the charity. Will said, “The group has been fantastic. Your social life just slips away from you so it’s an opportunity to meet people and share experiences with others who have been through, or are going through what you are. Maggie Edwards, MND Scotland’s Welfare and Benefits Advisor, has been a lifesaver. She has been so supportive and has helped us fill in complicated forms, which has lifted a huge weight off our shoulders.” Dawn added, “The NHS has also been fantastic. I couldn’t fault the care I have received.
“I have already taken part in a few research projects. I am on the Scottish MND Register, which is really important for gathering information about MND across Scotland. If you have MND but aren’t on the register, please get in touch with MND Scotland. As part of this project I have also donated a saliva sample so that my genes can be examined. If I fit the criteria for research, I’ll do it. Anything to help us find a cure."