Emily Weaver lives with her parents Liz and John Weaver in the family home in Brackla, near Bridgend. Aged 12, Emily was the first child to pass through Tŷ Hafan’s doors when the hospice opened to children with life-shortening conditions for the very first time on Monday, January 25, 1999. Here Liz tells Emily’s story in her own words.
“Emily was born at 29 weeks with quadriplegic cerebral palsy and at the age of two she suffered a major trauma which resulted in more brain damage.
“From the very start we were told that it was unlikely she would survive for very long at all. 
“But having Emily made us stubborn. We learned how to challenge the authorities and not just accept what we are told.
“We had been told that Emily was unlikely to survive, and yet there she was at 12 years old, the very first child to come to Tŷ Hafan.
“As she got older we were told that Emily had a life expectancy of 35 – maximum. She is now 37.
“Emily is partially-sighted, she has no speech and she is fully peg fed. But she is such a delight. She loves life, loves having some fun, and particularly loves going to the pub with her carers – the Two Brewers, Brackla. She can’t drink, but that’s not the point. She’s best of friends with another disabled lady who lives locally and it’s about the social aspect of it and being part of the local community. So many people know her locally.
“We’ve always looked on every day as a bonus. We’ve never been just prepared to sit back. We’ve always had the attitude that we’ll do everything in our power for her. Emily is the core of our family whether the rest of them like it or not!
“Tŷ Hafan was an absolute lifeline for us. When she was little there wasn’t much support on offer via social services, and nothing really suitable for Emily.
“Then we heard that there was this new place under construction but we assumed that it would be just for terminally ill children.
“However because Emily was classed as having life-limiting condition, she qualified for Tŷ Hafan.
“So there we were, going to this totally new facility and we were able to use it. Emily was the first child in – and we never looked back after that. We had so much faith in the staff there – we said ‘Right she’s yours now!’
“At first it felt really strange to be able to let go a bit. Even when we were there with Emily, I’d sit there and think to myself ‘What am I supposed to do now? What are my hands for? I should be doing something.’
“But that just shows the confidence we had in Tŷ Hafan and its staff. With every visit, you got to build that confidence to enable you to let go a little bit more.
“And Emily loved it there! Disappointingly, she did not miss us at all!
‘Emily’s older brother and sister, were 13 and 10 when she was born. They have always been amazing with Emily and Tŷ Hafan has also been there for them whenever they have needed it.
“When Emily stayed at the hospice, it gave us the opportunity to give them some time, which was very rare for us. It seems like a lifetime ago now.
“Both our other children and now our grandchildren too are still very protective of Emily. It’s good for people to realise that not everybody is able to do things the same as other people.
“Twenty years ago I was diagnosed with breast cancer and we did not know how I was going to cope. I had to go into hospital. John asked if there was any chance Tŷ Hafan could take Emily for a weekend. The answer came back – ‘No, we will have her for longer than a weekend.’ This took such a lot of pressure off John. He didn’t have to worry about Emily while I was unwell.
“Just before covid I had to have open heart surgery. At that time we had really good team of carers who came into the house to care for Emily as she was too old for Tŷ Hafan by then. That’s the issue: when children with life-limiting conditions get older – what happens to them then? Stay obstinate, I say!
“I dread to think what life would have been like without Tŷ Hafan.
“Unless you are in a situation like this, the majority of people just don’t get it. Having a child with life-limiting conditions, like Emily, is not just for 24 hours. It’s for 24 hours, 7 days a week, 365 days a year, and for how many years?
“Children gain independence and they do fly the nest, but with Emily and those like her this is never going to happen. Looking after a child such as Emily is a lifetime commitment and when they are children, Tŷ Hafan is a lifeline.”
