Dad of girl who died from condition so rare it doesn’t have a name misses her ‘every day’
SCARLETT THOMAS WAS JUST FOUR WHEN DOCTORS DISCOVERED SHE HAD A CHROMOSOME DISORDER
A FATHER whose daughter died from a condition so rare it doesn’t have a name said “I still miss her every day”.
Scarlett Thomas was aged four when she died as a result of the condition.
Scarlett spent the first three months of her life at the Royal Gwent Hospital, Newport, being genetically tested before doctors discovered she had an unbalanced translocation of chromosomes seven and 10. She died in hospital in September 2018, following operations on her heart and lungs.
Her father, Chris, and mother, Clair, from Caerphilly, were able to make “amazing memories” with Scarlett before her death, which they credited to children’s hospice Ty Hafan. Chris is now fundraising for Ty Hafan by running the ABP Newport Marathon on Sunday, April 28.
Chris, 41, 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 in the right place. It meant she needed round the clock care. Ty Hafan contacted us when she was seven months, but we didn’t go until she was two.
“When someone tells you your child needs to go to a hospice, it’s not great. You 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.”
Scarlett’s family used the charity’s respite services which Chris said allowed them to spend quality time together. He added: “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.
The power station engineer said: “She was so happy and smiley, and although she was non-verbal, she was very loud. She had a cheeky personality and was so funny.”
Chris has taken on many fundraising challenges to raise money for Ty 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”.
He added: “It’s still really hard and I miss Scarlett every day. I’ve done a lot of fundraising, but I wouldn’t be able to do any of it without Clair’s support.”
Chris and a group of other Ty Hafan dads will be taking on the Bike Boat Boot challenge in June, which will see them travel the length of Wales in four days. Speaking about the marathon, 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 want to raise money to help others. The thought of someone going through that and not having the support of Ty 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.”
You can visit the fundraising page at tinyurl.com/5spfzwua if you’d like to support Chris.