A dad from Caerphilly will be taking on the ABP Newport Marathon next month to raise money for Tŷ Hafan.

He’ll be doing so in memory of his daughter Scarlett who sadly died aged four from a condition so rare that it doesn’t have a name.

She spent the first three months of her life in the Royal Gwent Hospital being genetically tested before doctors discovered she had an unbalanced translocation of chromosomes 7 and 10.

Chris Thomas, who works as a power station engineer, said that Tŷ Hafan allowed him and his partner Clair to make some amazing memories with Scarlett before she passed away in September 2018. He is now fundraising to allow the children’s hospice to continue to help other families who need them.

The 41-year-old said: “Scarlett had a rare chromosome disorder which caused several complications including muscle wastage in her brain, poor muscle tone, scoliosis, hearing loss and coloboma, and her lungs and heart weren’t sitting in the right place. It meant she needed round the clock care. Tŷ Hafan contacted us when she was seven months old, but we didn’t go to them until she was two.

“When someone tells you your child needs to go to a hospice, it’s not great. You initially conjure up a picture that’s all doom and gloom, but when we walked through their doors and we saw all these children playing, doing arts and crafts and taking part in music therapy – you realise it’s a place that celebrates life rather than focusing on the outcome.”

The family used the charity’s respite services which Chris said allowed them to spend quality time together as a family.

He said: “It helped to take away the long nights and tough times and enabled us to interact with other parents, to remind us we weren’t alone.

“Their facilities are amazing, and they have the best hydrotherapy pool, which Scarlett loved. They had so many things that helped with her development and play that you just wouldn’t get anywhere else.”

Chris said that Scarlett enjoyed going to music therapy and playing in the sensory room. She loved dressing up as Disney Princesses and going to the parties that were put on too.

“She was so happy and smiley, and although she was non-verbal, she was very loud,” said Chris. “She had a cheeky personality and was so funny.”

Sadly, Scarlett passed away in hospital when she was just four years old following operations on her heart and lungs.

Since then, Chris has taken on many fundraising challenges to raise money for Tŷ Hafan. He also had a tattoo designed in her memory – a red star to represent her name, Scarlett Seren, with a picture of a rocket, the moon and the Earth as he ‘loves her to the moon and back’.

Chris said: “It’s still really hard and I miss Scarlett every day. I’ve done a lot of fundraising challenges for her, but I wouldn’t be able to do any of it without Clair’s support.”

The ABP Newport Marathon will form part of a bigger challenge Chris is taking on with a group of other Tŷ Hafan dads in June – some who have lost children while others are still receiving care and support from Tŷ Hafan. It’s called the BikeBoatBoot challenge and will see them travel the length of Wales in four days.

This will be the third big challenge the group have undertaken after previously completing the 5in55 in 2018 which saw them win a JustGiving award for conquering the three national peaks together with the three Welsh peaks in 55 hours.

In 2022 they also did the 10nTaff challenge which saw them take on five of the highest peaks in north Wales, five of the highest in the South and cycle the Taff Trail from Brecon to Cardiff.

Chris said: “This will be the first time I’ve ever run a road marathon and although I’m a little nervous, doing something different is really exciting.

“One of the things I’ve learnt with Scarlett is that stuff doesn’t matter – people and experiences are what matters in life. That’s one of the reasons myself and the other dads who have lost kids want to raise money to help others. The thought of someone going through that and not having the support of Tŷ Hafan, I don’t know how you’d get through it.

“Some of my best memories with Scarlett are from there thanks to their facilities which have all been fundraised for. Just £20 helps to pay for sensory toys or food for parents while at the hospice, so every little really helps to make such a huge difference.”

The ABP Newport Marathon – part of the ABP Newport Marathon Festival – takes place on Sunday 28 April alongside a 10K race and new half marathon option.

Matt Newman, Chief Executive at event organisers Run 4 Wales, added: “We’re always in awe of the runners like Chris taking part in our events. Tŷ Hafan is a fantastic charity that helps so many families in their darkest hours, but donations are vital in ensuring they can continue to operate. We’re looking forward to cheering Chris round the course and hope he manages to raise much needed funds for the charity in the process.”