Ty Hafan

family stories - Rhys

luca's story

Luca Pucella was a happy, energetic little boy with an infectious laugh, a wicked sense of humour and a tremendous zest for life. He brought love and joy to the lives of his family, his friends and everyone who knew him. But something made Luca different to other boys. He suffered from a rare, life-limiting condition, and in November 2017, when he was just eleven years old, Luca passed away.

ROHHAD syndrome causes rapid-onset obesity, impairment of the autonomic nervous system and reduced lung function. Luca was the only person in Wales to suffer from the incurable condition, affecting around 75 people worldwide.

Angelo, Luca’s dad, said: “When Luca was first diagnosed at two and a half years old, we felt very much on our own. ROHHAD meant Luca had a host of health problems including repeated respiratory and cardiac arrests, which left him in intensive care. He also had to use a ventilator at night to support his breathing and had a one-to-one nurse to monitor him during the night.

Luca’s diagnosis meant the family faced a difficult and uncertain future so they felt a huge sense of relief when they were referred to Tŷ Hafan in 2010. Luca spent the remaining years of his short life in and out of hospital, and Tŷ Hafan helped Angelo and the rest of the family give him as normal a life as possible, not letting his illness define him.

“Tŷ Hafan was one of the support networks that became our extended family”

Luca’s diagnosis meant the family faced a difficult and uncertain future so they felt a huge sense of relief when they were referred to Tŷ Hafan in 2010. Luca spent the remaining years of his short life in and out of hospital, and Tŷ Hafan helped Angelo and the rest of the family give him as normal a life as possible, not letting his illness define him. “Tŷ Hafan was one of the support networks that became our extended family, being there on the other end of the phone, visiting us when Luca was in hospital and providing the vital short break care that we so much needed. Not long before he lost his battle with his disease, Luca climbed to the top of Pen y Fan with the help of Tŷ Hafan and the Royal Welsh Fusiliers. It was a tremendous achievement for him and a moment to treasure forever”, said Angelo.

Part of Tŷ Hafan’s unique service is to provide support to the entire family. Luca’s little sister Sofia, now nine, loved to visit the hospice along with her brother, taking part in activity and adventure days, trips out and play therapy. She, Angelo and Beth remain part of Tŷ Hafan’s support groups, which allow mums, dads and siblings to meet families in situations similar to their own.

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