Ty Hafan
luca
Luca Pucella is a happy, energetic seven-year-old with an infectious laugh and wicked sense of humour. He brings lots of colour to the lives of his family and is a popular pupil at his school in Bridgend.

But what makes Luca different to other boys his age is that he suffers from a rare, life-limiting condition called ROHHAD syndrome. He is the only person in Wales to suffer from the incurable condition, affecting around 75 people worldwide. ROHHAD syndrome causes rapid-onset obesity, impairment of the autonomic nervous system and reduced lung function.

Angelo, Luca’s dad, said: “When Luca was first diagnosed we felt very much on our own.

“He has had a host of problems including repeated respiratory arrests. It’s really difficult seeing him in intensive care and Luca has probably been in every bed in the paediatric emergency unit at Heath Hospital.”

The family felt a sense of relief when they were referred to Tŷ Hafan in 2010, and have benefited greatly from the charity’s support.


“Tŷ Hafan has helped by always being there on the other end of the phone, visiting us in hospital and providing vital short break care,” said Angelo.

Part of Tŷ Hafan’s unique service is to provide support to the whole family, including siblings.

“We also have a daughter Sofia, aged five, who is fit and well and is now starting to be more aware of Luca’s condition,” said Angelo.

“Thankfully, we have received a great deal of support from Tŷ Hafan and they have made a huge difference to us and many other families.”

“Both Luca and Sofia love visiting Tŷ Hafan and have great fun with all the staff. They aHilso enjoy participating in the activity days arranged throughout the year, the most recent being a superhero-themed cinema visit.

“I recently took part in the Welsh Three Peaks Challenge and Bubble Football event for Tŷ Hafan with some of the other dads – it’s a great opportunity to meet with other dads to share our family situations. My wife has also been on ‘pamper days’ and Christmas shopping trips to Bath with other mums. Again, it allows us to meet others in very similar situations.


“Having experienced first-hand the support that Tŷ Hafan provides to us and others we cannot thank them enough, for providing care and being there! Thank you Tŷ Hafan!”

 

harry baxter

Everyone says ‘life’s too short’, but I’d never really appreciated just how true those words were until my son Harry was born.

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