Ty Hafan

#family friday

hafan brought us together as a family 

Callum in his wheelchair surrounded by family

This week is both Mental Health Awareness Week, and, Dying Matters Week, an initiative designed to help people to have honest conversations about death. Here Amie Sainsbury, whose son Callum, died at  Hafan three years ago aged six, shares her memories of her son and what  Hafan has given her and her family.

“Callum was born by C-Section at 38 weeks and he was fine. But at just four weeks old he started to suffer from reflux, bringing up his milk all the time, and at five weeks he started to have seizures.

“He was taken to Neville Hall Hospital. I was so worried but Callum was smiling throughout it all, believe it or not, even after having to have a lumbar puncture.

“All in all, he was in hospital having tests for three months and at one point then we almost lost him.

“Then we got the diagnosis. Callum had Otahara Syndrome (like David Cameron’s son). He was also diagnosed with cerebral palsy and we were told he had problems through having a very rare gene, the ARX gene.

“It was so hard to take it all in. We carried on on our own for a bit, but then, when Callum was three, we started going to Tŷ Hafan.

“I was apprehensive at first. But when I got there I thought to myself ‘What am I worried about?’ It was such a nice place to be, so welcoming and right from the start Callum absolutely loved it.

Callum with Alyn Wyn Jones

“Callum could not talk or walk and he used a wheelchair but he absolutely loved all the nurses. His own little character and he was a bright and happy little boy and although did not have an easy life, Tŷ Hafan made it easier for us and for him. He even got to go to school at Penycwm.

“Initially, Paul, Callum’s dad, thought that life-limited meant that Callum couldn’t do much. But that’s not right. Tŷ Hafan helped us all to understand that life-limited meant that Callum could go at any time, not that he couldn’t do very much.

“My daughters Katelyn, Demi and Kelcea, took it all in, Kelcea, especially, even though she was so young herself. One day she went to Brownies and explained everything about her brother.

“Kelcea was only 10 when Callum died and the day we had to let him go, well, that was the hardest decision I have ever had to make.

“We sat Katelyn, Demi and Kelcea down and told them then ‘It's not good news’ there was nothing more we could do and that we’d just got to let nature take its course.

“Katelyn and Kelcea took it OK, but also not OK. We stayed in the flat at the hospice and we took it in turns, sitting with him and talking with him. We played him his favourite songs including songs from The Lion King and We Are Young.

Callum with Leigh Halfpenny

“When we got tired, the nurses encouraged us to lie down with him and try to sleep. And when we did, the nurses kept watch and woke us up when they needed too.

“Then, one of the nurses woke me and said ‘Aime, I think it’s time.’

“I said to Callum, ‘If you need to go butty, then please go, it’s OK, we’re all ok - but don't go now, cos Mammy needs a wee! And do you know what? Callum held on.

“Kelcea was holding him and she said ‘I hope you have fun up in those gardens in heaven.’ It was like he was waiting for Kelcea to see him go.

“Callum would have been nine on the 18th of May and there isn’t a day go by that we don’t think about him.

“And it’s thanks to Tŷ Hafan that we’ve got so many really happy memories of our time together. The nurses took us all to the beach, they made a cast of Callum’s and Kelcea’s hands, and in 2019 we even got to go on a trip for bereaved families to Disneyland.

“Without Tŷ Hafan we would not have had half the things we have now.

Callum in his wheelchair

“We’ve got relationships and friendships now, with staff and with other parents going through similar things.

“Even though Callum passed three years ago, we’re still supported – our Family Support Worker Hayley texts me and asks me if I’m ok. For Katelyn, Demi and Kelcea this is really important. If they need to talk they’ve only got to give Tŷ Hafan a ring.

“We all went there as a family. And I think it brought us together, better.”