Sally Ferriday and her son Jacob live in Palmerston, Barry. In 1999 Jacob, then aged two, was one of the very first children to be supported by Tŷ Hafan after it opened on Monday, 25 January 1999.
Here Sally explains in her own words what Tŷ Hafan has done for her, Jacob and their family.
“Tŷ Hafan has been amazing for us. Jacob’s needs were so great. I was a single parent. Jacob’s dad walked out when he was five. He could not accept Jacob. That was his issue. But I was left on my own with seven kids.
“Tŷ Hafan was brilliant for me especially when I broke my leg, and, when I put my back out. Without their support I do not know what I would have done.
“My first contact with Tŷ Hafan thanks to a woman called Jane Saunders. The hospice was still being built and she came to see me to assess Jacob for care by Tŷ Hafan. At the time Jacob and I were just not going out anywhere, because I had been so hurt by some very cruel comments that had been made by a woman in the street about Jacob.
“When Jacob was just a day old he had his first massive seizure. A consultant had put a drip into his head to try to control this, but unfortunately he had put the drip into the wrong place which meant that Jacob’s head was badly burned.
“It was black and Jacob did look horrendous.
“We’d gone out, Jacob was in his pram, and out of nowhere a woman just came up to me and said: ‘What the hell is that in there!’ pointing at Jacob.
“People can be so cruel and it broke my heart what she said about him. It also left me too frightened to go out with him because I was just so scared of what people were going to say to him and me.
“But Jane helped me to overcome this. She told me ‘Get your coat on, get his coat on and get out there and start making some memories.’
“And I thought to myself, ‘Do you know what, you are right!’
“And we did get our coats on and we did get out there and we did start making some memories. So that was an example of the support we were getting from Tŷ Hafan even before the hospice building was even built!
“Tŷ Hafan has had an amazing impact on Jacob. He so loved the hospice. And he’s got to meet a lot of people, Cardiff City players, lots of other sportmen and women, including Leigh Halfpenny.
“The support Tŷ Hafan gives to people is amazing. Jacob would come in to stay for three days at a time.
“That couple of days when I wasn’t looking after him round the clock gave me a little bit of a break. When you are in that position, the support from Tŷ Hafan gives you what you need. Even if it means you can just catch up on your sleep a bit. It’s so important. So I’ve tried to give back where I can. I’ve had a film crew follow me around and I’ve done some talks for Tŷ Hafan.
“Jacob is one of seven – my oldest is 33 and my youngest is 22. They’re all there for Jacob and are very protective of him. They joined in all the activities that Tŷ Hafan put on and I think they are much more aware of disability and more conscious of what’s involved.
“We nearly lost Jacob last September. He had sepsis again and it was touch and go for a while. But he’s fine again now. The thing is when you have a child like Jacob and they are well for a long time you get a bit complacent. Then when they are ill, it hits you for six.
“I think that until you are in that position of looking after a life-limited child or young person, or are closely involved with it, you’re ignorant of what it means to be disabled.
“Things are starting to change and things are starting to get better. People are more aware of others. But there is still a long way to go.”