Molly has SMA Type One, which means she uses a wheelchair and finds it difficult to lift her arms. When she visits Bluebell Wood she loves to colour, have her nails painted, and play with her friend, Chloe, who has the same condition. Mum, May, shares her story.

“Molly was our second pregnancy. We’d had a really straightforward pregnancy with our first child, Anya, and we decided to have another baby. We got pregnant really easily, and all our scans were fine. The only problem was that Molly didn’t seem to move very much, but the doctors said everything was fine. We ended up having another lovely birth at home in October 2012.

“It was two months later when I noticed something was wrong. My brother had bought Molly some pyjamas for Christmas, and when I put them on her legs and arms just felt floppy. I would pick up her arm and it would just flop down like a dead weight.”

May and her husband, Julian, spent the next nine months trying to figure out what was wrong. When Molly was one, a health visitor arranged for them to see a consultant. May said, “When the health visitor came to visit us for the first time he asked all us sorts of questions, like ‘can she walk or sit’. We had to say no to every question.”

The first time the family heard the phrase ‘SMA’ was at their consultant appointment in Barnsley, but it took until 8th April 2014 for Molly to be officially diagnosed. May said, “Molly’s diagnosis was such a whirlwind. When I first heard about SMA, I decided to google the condition; the words ‘life-limiting’ and ‘two year life-span’ jumped out at me. At first I didn’t believe it, but the more I read, the more it felt like I was reading about Molly. It took a long time for Molly to actually be diagnosed; she had to have an awful test where they put electric shocks through her legs to test her motor neurons, before she was allowed to have the blood test for SMA. When we were finally told she had the condition, it was like my whole world collapsed.

“Initially, all we thought about was the end. We started planning Molly’s funeral, and we decided to have another baby so that Anya wouldn’t have to grow up as an only child. I ended up taking eight weeks off work, and it took me six months to get through a day without crying. I was feeling really down, although at the time I didn’t want to admit it.

“When the hospital referred us to Bluebell Wood it felt like they were preparing us for the worst. The first time I visited I felt really scared, but I started to realise that it wasn’t a place I needed to be frightened of. We started coming every month with Molly, and the hospice pretty much saved our family. They taught us how to play with Molly, and not just manage her. When Edmund came along things got really difficult, but Bluebell Wood helped us so much.”

After Molly turned two, May and Julian realised she wasn’t going to die immediately, and they had a bit more time. They started adapting their home, and trying to make each day as normal as possible. May said, “With SMA, Molly is physically disabled, but her mind works fine. Sometimes she gets upset and says ‘I wish SMA would go away’, and we’ve had some really difficult conversations, but we want her to know just because she’s disabled, it doesn’t mean her life is over.”

Getting to know some of the other families at Bluebell Wood has been a big help to May, and to Molly. When Molly turned two, one of the nurses arranged for her to meet Chloe, who also has SMA, and they’ve been friends ever since. May said, “Meeting Chloe for the first time was like looking at a mirror image of Molly – they have the same strengths, the same weakness, they even made the same faces. Chloe’s mum, Lindsay, and I were also going through the same thing – we both thought our little girls would wear princess dresses, go on dates, and get married, but it’s turned out so differently. We’ve become like sisters, and so have Chloe and Molly. And we wouldn’t have met if it hadn’t been for Bluebell Wood.”