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28.02.2025
“I didn’t have anyone to talk to” (Rare Disease Day 2025)
“My son Callum was just six when he died in December 2018,” says Amie. “He had Ohtahara Syndrome, a rare form of epilepsy, which meant he could have anything up to 19 seizures a day.” When she got Callum’s diagnosis,...
17.05.2024
Maisie’s ‘Twin Peaks’ challenge
On 1st June, 9-year-old Maisie Humphreys will be taking on the Aberystwyth Twin Peaks Challenge, to raise money for Tŷ Hafan. Maisie will be joined by Mum – Cerys, Dad – Andrew and Nel (who will celebrate her first birthday...
25.01.2024
Emily, Liz and John’s Story
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...
25.01.2024
Jacob and Sally’s Story
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...
09.10.2023
Max’s Story
“Max was born 17 Jan 2016,” says Martina Harding. “He was perfect and a beautiful little brother for our daughter, Mila. But quickly we noticed that things were different for Max.” Within nine weeks of their son’s birth Martina and...
04.10.2023
Alfi’s story
Alfi was born with Neonatal Marfan syndrome, a rare condition that meant his life would be a short one. “On 1st May 2013, Alfi Jay and Besi Jane entered into the world,” says Sara. “Our life became perfect in those...
15.06.2023
Tom’s story
Twenty-nine-year old Tom Martin lives in Cardiff and was first referred to Tŷ Hafan in 2002 at the age of nine. An avid Cardiff City fan, a member of the Welsh National Boccia Squad and BC4 Welsh National Champion, Tom...
15.06.2023
Seth’s story
Fourteen-year old Cardiff schoolboy Seth Burke has been using Tŷ Hafan for the past six years. The St Cyres pupil was born with Duchenne Muscular Dystrophy, a progressive condition, which means that his muscles are not as strong as those...
15.11.2022
Rose’s story
Andrew and Catherine Jeans lost their beloved daughter, Rose, to Atypical Teratoid Rhabdoid Tumour just days after her first birthday. This is their family’s story. “Our daughter, Rose, was born on 11th February 2019. She was perfect and a much longed...
08.11.2022
Cai’s Story
“I’m Micaela, mum of three sons – Cai, who passed away at Tŷ Hafan earlier this year and his younger brothers Harrison and Nico. “So much has happened in my life with Cai. When he was little he was diagnosed...
20.10.2022
Thomas’s Story
“Until autumn 2017, Thomas was a normal eight-year-old boy,” says dad James Meacham, from Blackwood. “He was very fit, he studied karate, he was intelligent, a keen reader of David Walliams and Harry Potter, a total Star Wars geek and...
20.10.2022
Marshall’s story
“My name is Susan and I live in Bridgend with my two sons, Tyler, 16 and Marshall who is 13. “Tyler is your typical teenager but life has worked out rather differently for his little brother. “Marshall was born full...