3 minute read
molly and emily’s story
Sisters Molly and Emily bring so much joy and love to their mum and dad’s lives, but since they were born, life is not how their parents James and Sarah ever expected it to be.
Both girls were born healthy babies two years apart, but as time went on, their parents noticed their daughters weren’t developing as they should be. In 2008 Molly, now 14, and Emily, now 12, were separately diagnosed with Rett Syndrome – a very rare condition that affects the development of the brain. Doctors have also explained to James and Sarah that it was likely that the girls’ lives would be short. to believe it. The doctors eventually told us about their condition and in the space of just eight months, I‘d been told that not only one but both of my beautiful girls would have short lives. I’ve never been able to find the words to describe that time, but I will never forget how alone I felt. I had plenty of family around me, and my mum’s support was invaluable.
But at the same time, I also had a feeling of isolation because of what we were facing”, she added.
As the girls’ condition developed, Sarah became more of a carer than a mum. She felt as if she had no one to turn to, until the family’s social worker referred them to Tˆy Hafan. Sarah recalls how frightened she was on that first trip from the family home in Fishguard to the hospice in Sully, thinking that Tˆy Hafan was a place for dying children.
Sarah said: “But as soon as we got there, I instantly felt like months of worry and isolation were behind us. We were around other families in the same position as us and we had the extra physical and emotional support from professionals. We were no longer alone. It was as if Tˆy Hafan was saying to us: “sit back and relax, we’ll look after you all now’”.
Sarah continued: “Our short break stays mean so much to us. The girls share their own room and James and I stay in the family rooms. We all do things together, whether that’s going in the hydrotherapy pool, doing arts and crafts, having trips out or spending time in the playground which is specially designed for wheelchairs. We just have time to be together as a family. James and I might go out for a meal or shopping and sometimes I just go off on my own for a little bit of ‘me’ time. All of this would be impossible for us to do without the support of Tˆy Hafan”. And the support doesn’t stop at the hospice. Sarah explained: “Our family support practitioner has given us support that has truly changed our lives. She helped us to get our purpose-built bungalow so that the girls can move around their own home like anyone else can”.
“Molly has recently been diagnosed with scoliosis – curvature of the spine – and will need surgery at some point. Both girls have regular seizures which are controlled by medication. If they become poorly with a bug or a cold, there’s a risk of their fits increasing. As the girls are growing, it’s becoming more and more difficult for me physically to support them, so we need more equipment that will help improve their mobility. Tracy, our support worker, has helped us out with so many things, whether it’s chasing up any equipment that we need, liaising with our local authority, assisting us with financial issues and even helping us have a holiday. It all means so much – even if it’s just a phone call or email to check we’re OK”. Sarah added: “It’s difficult to describe what our lives would be like without Tˆy Hafan. It’s something I don’t really want to think about. I often find myself counting down the days to our next visit.”
