When little Lilly-May was born in April 2014, her mum Rhian was thrilled to hold her brand new, healthy baby girl in her arms. Rhian had had an uneventful pregnancy, and none of her scans had shown up any problems. Lilly-May was born by emergency caesarean section and was slightly jaundiced, but with no treatment needed, Rhian took her daughter home 5 days after her birth.
However, as the months went on, Rhian noticed that her baby daughter wasn’t gaining weight as she should have been, and was taking a long time to feed. For the first few months of her young life, Lilly-May was back and forth to hospital for various tests to find out what was wrong. Eventually, when she was 9 months old, Lilly-May was diagnosed with dysphagia or unsafe swallow which meant that she had difficulty swallowing any foods or liquids, and they were going directly into her lungs and not into her stomach. This meant she would have to be tube fed for the rest of her life. Rhian was devastated but the worst was yet to come.
Rhian explained: “Before we were referred, I had heard of Tŷ Hafan but I thought it had a dark side and was a place where children spent their last moments. So the first time my mum and I took Lilly-May there, I was really anxious and nervous. But when we got there, I saw it was nothing like a hospital, and it had a lovely vibe.
Just a month later, her doctors diagnosed Lilly-May with Leukodystrophy, a life-limiting brain condition that affects the central nervous system, which is responsible for nearly everything we do from our heartbeats to walking. Although Rhian had her family around her, she felt very alone following the news. But when she was referred Tŷ Hafan, that all changed.
“It’s like being welcomed into one big family”
“Lilly-May loves Tŷ Hafan. She loves bright lights, sounds and textures so the sensory room and messy play is great for her. But her absolute favourite is the hydrotherapy pool. She spends hours in there, loving the feeling of the water and the bubbles. As soon as she’s in, she starts laughing - getting her out of there is the trouble.