Scarlett is a beautiful two-year-old who is always smiling and giggling and loves dressing up as a fairy-tale princess.
But what makes her different to other toddlers is that she is battling a condition so rare it doesn’t even have a name.
Tŷ Hafan has been supporting Scarlett and her family since she was seven months old, providing vital emotional support and short-break care at the charity’s hospice in Sully.
Her mum Clair Partridge said: “Because Scarlett was so poorly, and her condition was so unknown, we spent three long months in hospital.
“She had a genetics test and was diagnosed with an unbalanced translocation of chromosomes 7 and 10. Scarlett is the only one to have the condition and there isn’t even a name for it.”
Clair and her fiancé Chris Thomas from Caerphilly were finally preparing to take their baby girl home when she had her first seizure.
“She had twelve seizures in about half an hour,” said Clair. “We were told that if she had another seizure in the next couple of hours they weren’t going to resuscitate her.
“We were terrified. Were we ever going to be able to take our baby home?
“That’s when Tŷ Hafan came into our lives. They came to visit us at hospital. I remember asking Hayley if Scarlett was going to live. I was desperate for answers.
“She said ‘these children write their own paths and they’re all different’. She understood. After that first meeting I didn’t feel like we were on our own anymore.”
A special Tŷ Hafan moment was when the family first stayed at the hospice during Christmas last year.
Clair said: “We stayed with Scarlett the whole time apart from one day when we left her for two hours. It might not sound like much but for us it was the first time we’d left her.
“When we got back to the hospice Scarlett was dressed as Snow White with high heels and a feather boa. She’d obviously had the best time! She was relaxed and so were we. We really needed that time for us.”
Being cared for by a children’s hospice was a daunting prospect at first, but the couple look forward to their time at Tŷ Hafan as it helps them enjoy quality time as a family and as a couple.
“Going to Tŷ Hafan is the only time we get to be a family,” said Clair.
“It takes away the long nights and the tough times. It helps us to interact with other parents and reminds us we’re not alone. We are also able to go out as a couple which we never normally do.”
Scarlett is adored by all the staff at Tŷ Hafan who help the family enjoy different experiences like spending time in the hydrotherapy pool, play room and sensory room and, of course, going to parties!
Clair said: “Scarlett is now two years old. She’s wicked, cheeky and funny. She enjoys it at Tŷ Hafan and gets so much out of it. Like, when she held a rattle for the first time, or the first time she banged a drum. Thanks to Tŷ Hafan we’ve learnt how to play with Scarlett focussing on her strengths instead of what she can’t do. As long as Scarlett is happy and smiling we can cope with anything
“Before Tŷ Hafan we shut everyone out and didn’t know how to cope. There are families in Wales who have been told their child may die in childhood, and they’re desperately trying to cope. We wanted to share our story to help raise awareness of Tŷ Hafan and the amazing support they provide to families like ours.”
Tŷ Hafan relies on the generosity of the public to offer its unique service to life-limited children and their families. The charity is asking individuals to do what they do best and fundraise for Tŷ Hafan this Children’s Hospice Week.
Alison Stallard, Tŷ Hafan’s Head of Regional Fundraising, said: “We all have something we do best – something that can raise money for Tŷ Hafan. Put your thinking cap on and ask yourself: What’s my best? Is it baking a batch of cakes and hosting afternoon tea, or holding a quiz night at work? Whatever you do best, we need you to embrace your fundraising passion and join Team Tŷ Hafan today.”