Back at their home in Barry, Sophie found a sacral dimple at the base of Ollie’s spine, so at eight days old he had a scan for suspected spina bifida, which didn’t reveal anything. His parents were worried that he wasn’t feeding properly or swallowing and he wasn’t gaining weight. With Ollie having endless trips back and forth to the doctors, medical experts couldn’t pinpoint the problem but, after four long, anxious months, Ollie was eventually diagnosed with Pallister Killian syndrome – an incredibly rare chromosome abnormality that results in complex medical issues.
Sophie explained: “For the first 18 months of Ollie’s life, his development seemed reasonably normal but that soon slowed too and he started having more and more seizures. We were referred to Tŷ Hafan by our consultant when he was a year old, but that first time we didn’t get a place. Time went on, and Ollie continued to be very poorly, with constant, severe chest infections and other illnesses. He was awake all the time at night, and I was at the end of my tether with sleepless nights and medical appointment after medical appointment. I needed some help, so I self-referred when he was two years old, and this time, we were offered a place”.
“Although I knew they were going to help us, I hated the thought of a hospice. Everyone hates that word, don’t they? But the moment Sean and I walked through the doors of Tŷ Hafan; we knew we couldn’t have been more wrong. It was nothing like you’d expect. The first time we took Ollie there for short break care, we both stayed overnight as I was worried about leaving him, but soon all my worries disappeared. I know now how much the nurses love him and take complete care of him. He’s so well looked after I’m happy to leave him there with them”.