Jacob's story

The Thomas family from Bethesda near Narberth were first referred to Tŷ Hafan in 2006.  Their son Jacob was then twelve years old and, as a result of suffering from Duchenne Muscular Dystrophy, had got to the stage where he needed a wheelchair to get around.  But that was definitely not going to stop Jacob and his family living life to the full.

Jacob’s mum Caroline remembers feeling reassured that there was an organisation like Tŷ Hafan she could call upon when life began to get more difficult, which she knew would happen as Jacob’s condition deteriorated.

“We were referred to Tŷ Hafan by some good friends of ours who also had a son about the same age as Jacob, albeit with a different condition.  It was great to know that we could go and stay at Tŷ Hafan when we needed to but at the time we felt that we were coping.

“It was great though to get a phone call every so often to make sure everything was OK – just to know that support was there was invaluable”

Unfortunately earlier this year Jacob, who is now sixteen, suddenly became very ill with liver failure and had to be airlifted to the Queen Elizabeth Hospital in Birmingham for emergency treatment. Hayley Mason from Tŷ Hafan’s family support team was in constant contact with Caroline who, along with dad Mike, took it in turns to stay at Jacob’s bedside.  The strain inevitably began to take its toll and the couple were becoming exhausted with their anxiety about Jacob and being so far from home and Jacob’s twelve year old sister Polly.

Early in February Hayley travelled up to Birmingham to visit Jacob and the family to give them emotional support and help with any practical problems.

Eventually Jacob began to improve and he was finally moved back to Wales to continue his treatment at Morriston Hospital and life for the Thomas family began to get a little easier.

Jacob is now much better and back home in Bethesda.  He is  also back in  training and competing in his favourite sport of Boccia, for which he plays for Wales.

“Like many families who are coping with a disabled child, Mike and Caroline just get on with it” explained Hayley.  “But I think people forget how much parents like them, who devote their lives to giving the very best of care to their children, need caring for too – just to keep them going”

“They know that Tŷ Hafan is always there for the whole family – for as long as they need us”