Frankie's Story

"Hospice gave us the time to be together and you don’t often get that."

When Christine (Frankie’s mummy) was pregnant she was told at her big scan that Frankie wasn’t very well, his organs weren’t in the right place and they prepared her for the worst as they didn’t expect Frankie to survive. Frankie proved them all wrong, he not only survived he thrived, despite the seriousness of his condition. It hasn’t been easy for Christine or Frankie and his big brothers Billy and James.

At two and a half, Frankie may look like the picture of health but in his short wee life he has had four heart surgeries, a cardiac arrest, a stroke and what he really needs is a heart and lung transplant.

Christine talks about how Hospice came into their lives, “When I was offered the chance to come with Frankie to Children’s Hospice, I agreed - but to be completely honest, I was very sad. I felt that this was being offered to me because they felt Frankie wasn’t going to make it. But when I came to Hospice, I realised it’s not what I thought it was and I came away feeling uplifted. Our first stay at Horizon House was over New Years last year. It was lovely.

The kids had fun playing and hanging out in the family room, my partner Denver and I were told to relax - which felt really weird for me, not to have to get medications ready or look after Frankie or cook or clean! When Frankie settled for the night we spent the time quietly together, playing cards, it was like we had a little family bubble, where Billy and James had time with Frankie and importantly time with me as well - it can be really hard on the brothers and sisters of a child with complex health needs."

"Hospice gave us the time to be together and you don’t often get that."

"I also have help from Hospice during the week to allow me to get a good nights sleep and I know that when things get tough - which they have recently, I can turn to them to talk about really difficult things. Frankie’s condition could take a turn for the worse at any point and that’s a hard thing to live with every day and prepare for the future. But I know whatever happens that Hospice will be there for us and that means so much."

   

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