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 also explained to James and Sarah that it was likely that the girls’ lives would be short.
Mum Sarah said: “Looking back to before their diagnosis, we knew something was seriously wrong but I suppose we just didn’t want 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.
“It’s difficult to describe what our lives would be like without Tŷ Hafan”
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 Tŷ Hafan. Sarah recalls how frightened she was on that first trip from the family home in Fishguard to the hospice in Sully, thinking that Tŷ 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 that extra physical and emotional support from professionals. We were no longer alone. It was as if Tŷ Hafan was saying to us:‘sit back and relax, we’ll look after you all now’”.