Kiera was just a baby when she first visited hope House with her mum Teresa and dad Dylan. She had been diagnosed with a life-threatening condition at just five months old.

“It was devastating,” recalls Dylan. “Suddenly you go from having a child where you think about a future that includes maybe college and becoming a grandparent, to wondering how long your daughter is going to live and what her quality of life will be like.”

It was the hospital that recommended the young family to Hope House.

“I was nervous about going because, being a hospice, you think of it as a place of you come to die but I have never been to a place that is more about life than Hope House. My first impressions were that it was a wonderful place,” says Dylan.

“In the early days we stayed in one of the parents’ rooms so we could watch how Kiera was cared for and see she was enjoying herself. As our confidence and trust grew we could leave her with the nurses and have some time to ourselves to recharge our batteries.”

Best and worst of times

The Hope House nurses became part of Dylan and Teresa’s family. As Dylan says: "They were with us for the best of times and then the worst of times.”

The best of times came when Kiera was christened and the Hope House nurses helped to look after her on her big day. Then when Teresa and Dylan got married the nurses were delighted to escort bridesmaid Kiera to the wedding and help to look after her at the reception.

Tragically, the worst of times came two years ago when Dylan came home from work one afternoon to find Teresa had died suddenly of a heart attack.

“It was very sudden. I came home from work and Teresa had passed away. My world just fell apart. Losing Teresa was the worst thing that has ever happened to me,” he bravely recalls.

“I didn’t know what to do. I’ve always worked but now I had to give that up to look after Kiera. I needed financial advice because my savings were going to run out pretty quickly. Hope House’s social worker Lisa was great at helping me work out what to do and how to do it.”

There's no one I'd trust more

Kiera and Dylan both went to stay at Hope House where the nurses and carers looked after them and supported Dylan as he prepared for Teresa’s funeral.

“I was very, very fortunate to have Hope House. It was a huge help just being able to talk things through with people that I trusted when otherwise I’d have been sat at home worrying and mulling things over. Having company was so important to me at that time.”

Now, as a single parent and Kiera’s sole round-the-clock carer, Dylan appreciates the respite care Hope House nurses are able to provide more than ever. It’s an exhausting and difficult role, but one that he would never begrudge.

Kiera’s condition means she needs 24 hour a day care. She can’t stand, sit or roll over, she can’t feed herself or drink and she is doubly incontinent. She also suffers from epilepsy, with the majority of her big seizures happening at night when she is poorly or under the weather. It means Dylan can rarely switch off.

“The only outward sign is that she changes her breathing, so when you have a child with these problems you never sleep the same. I always sleep with half an ear open,” he says.

“When Kiera has respite, the first night I am still listening because I forget she isn’t here. But the second and third nights I can really sleep because I know she is safe and that if anything happened Hope House would call me right away.

“Hope House are my rock. If I have trouble or problems they are always there to help. There isn’t anywhere else that would give me respite, or somewhere I could trust to look after Kiera.

“When Kiera is at Hope House she is so happy. I love seeing photos of her on Facebook enjoying activities and trips and always with a happy smiley face. There’s no one I’d trust more with my daughter.”

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