‘We went from preparing for our daughter’s first birthday to being told she had just weeks to live’
Baby Rose Jeans’ story is at the heart of Tŷ Hafan’s first ever intensive fundraising appeal to raise £250,000 in just 60 hours. Health correspondent Mark Smith reports
ANDREW and Catherine Jeans never imagined that their daughter would barely live to see her first birthday.
Baby Rose took her last breath on February 13, 2020, just two days after she turned one and a few weeks after being diagnosed with a very rare and aggressive cancer.
Her devastated parents described what they went through as “a parent’s worst nightmare” and are now doing all they can to keep Rose’s legacy alive.
“It started off when Rose was about six months old,” Andrew recalled.
“She had what seemed like minor bowel issues and was diagnosed with dairy intolerance.
“By New Year’s Eve she was admit- ted to hospital because something just wasn’t right. She was rubbing her fore- head and playing with her hair. After scans doctors found several masses on her brain.
“It was first thought these masses were benign birthmark-type lesions but over the next few nights she started to deteriorate.”
On January 12, 2020, Rose was bluelighted by ambulance to the Noah’s Ark Children’s Hospital for Wales in Cardiff.
At the hospital she had several MRI scans, CT scans, and underwent three brain surgeries.
She also had several seizures because of pressure on her brain. “She spent six nights at the paediatric critical care unit and on January 28 we were told she had an aggressive cancer named atypical teratoid rhabdoid rumour,” Andrew added. “The few weeks between admission into hospital and diagnosis felt like a lifetime.
“The large tumour in her spine is what had been causing the bowel problems. We were told there was no treatment for her and that she would only be with us for a few weeks.”
On February 10, Rose was transferred to the Tŷ Hafan hospice in Sully, Vale of Glamorgan.
Then, just two days after her first birthday, Rose passed away in her mother’s arms. Mum Catherine said: “The only way I can describe what we went through is like some sort of war battle.
“What that little girl went through in such a short amount of time was awful and she didn’t complain – she just got on with it.
“We’re just so incredibly proud of her. She was sent to us as a little gift for whatever reason. It’s so brutal how perfect she was and didn’t give anyone signs of what she was hiding.” Catherine, a civil servant from Cefn Hengoed, said she didn’t know what
Ty Hafan gave us privacy but we could still have family around us. It’s a home-fromhome environment
Catherine Jeans
the family would have done had Tŷ Hafan not been there for them.
“Tŷ Hafan gave us privacy but we could still have family around us. Tŷ Hafan enabled them all to be there for us. It’s a home-from-home environment. Everyone matters. In hospital it’s different – it’s noisy, it’s chaotic, and very clinical.”
On Sunday, Tŷ Hafan launched its first ever intensive fundraising appeal in a bid to raise a £250,000 in just 60 hours with the heartbreaking story of little Rose at its heart.
The appeal was due to finish at 10pm last night.
Tracy Jones, director of family wellbeing and outreach services for Tŷ Hafan, said: “When families are told that their child’s life is going to be short their whole world changes.
“It changes again when they realise they must consider end-of-life care and again when they finally lose their child.
“Tŷ Hafan is there to provide endless support to families from the moment their world changes.
“We can’t give a family more time but Tŷ Hafan can make sure that families who find themselves facing a nightmare such as that faced by Andrew and Catherine Jeans and their son Oliver have the time and the support they need.”
Jenna Lewis, director of income generation for Tŷ Hafan, said: “It costs Tŷ Hafan £5.2m a year to provide care and support for children with life-shortening conditions and their families at our hospice in Sully and in homes and communities
across Wales.
“With the cost-of-living crisis this figure is just going up and up.
“Thanks to the generosity of our incredible matched funders, all donations made to www.tyhafan.org/ whenyourworldstops during this 60-hour period will be doubled so double the donations and double the impact.
“We know that times are incredibly hard for so many of us now but all gifts will make a huge difference to families like Rose’s.”
Catherine added: “It means a lot to give back to our Tŷ Hafan family after what all the incredible people there have done for us and Rose.
“I know that times are very tight for so many of people now but I hope that people do dig deep and give whatever they can to this campaign to help Tŷ Hafan to keep on doing what it does.
“Tŷ Hafan is here and now and the support you get from it never ends.
“Tŷ Hafan protects us and tells us: ‘It’s okay to feel what you are feeling.’
My mental state, Andrew’s mental state, Oliver’s mental state – the fact that we are all as we are today is down to having access to Tŷ Hafan.
“We didn’t – and still don’t – have to deal with the worst time in all our lives on our own.”