FFION’S BID TO REBUILD HER LIFE
A MUM and dad have opened up about their daughter’s devastating condition which turned her from an energetic 11-year-old girl “into a baby again”.
Ffion Westwater, from Merthyr Tydfil, had just returned from a three-day outdoor pursuits trip with her school in July 2018 when she started feeling unwell and shivery.
Her parents initially put it down to a nasty cold, but a couple of days later she began vomiting and complaining of severe headaches and was advised by their GP to visit the emergency department at Prince Charles Hospital.
Despite doctors diagnosing her with the stomach condition gastroenteritis and sending her home to rest, Ffion continued to worsen and was back in the emergency unit just days later.
A CT scan, followed by further tests at the University Hospital of Wales in Cardiff, then revealed that she had encephalitis, a severe inflammation of the brain.
The condition had such a disastrous effect on Ffion that she remained in hospital for many months and lost the ability to walk, talk and eat by herself.
“It was like having a newborn again, but you couldn’t pick her up as she was too big,” said her mother Leigh, 43, from Gellideg.
“She couldn’t swallow and needed a feeding tube, she couldn’t move her right side and she couldn’t give me any direct eye contact.
“She was like a rag doll. It was horrendous.”
Ffion responded well to treatment at the paediatric intensive care unit at the Noah’s Ark Children’s Hospital for Wales, where she began her treatment for encephalitis.
But none of the Ffion her parents knew and loved remained.
“Our daughter was there physically – which, after what she’d been through, was a huge relief – but there was nothing else,” added her dad James, 45. “She would wake and be put in her chair and that’s how she’d stay all day, void of any expression, just staring into space.”
A week after Ffion was struck down with encephalitis, which was caused by her immune system mistakenly attacking her healthy brain, more terrible news was to follow for the family when Leigh was diagnosed with non-Hodgkins lymphoma.
“I was on autopilot. I couldn’t even think about myself.
“I just had to get on with it and be there for Ffion,” said Leigh, who needed six months of chemotherapy while simultaneously caring for her daughter.
“Even though Ffion was not outwardly responding to us, she could still hear things we said, so I kept my cancer diagnosis from her.”
Six weeks after arriving on the Jungle Ward at the children’s hospital, Leigh and James were taken aside and told by doctors that Ffion’s condition may never improve.
But one afternoon Leigh noticed that Ffion’s eyes were tracking her across the room, something she had been unable to do since the diagnosis. She started reacting to her surroundings and only a few days later began mouthing words.
Leigh recalled: “I’ll never forget walking on to the ward that Sunday morning and seeing the excitement on the nurses’ faces.
“They couldn’t wait to tell us that, randomly, in the middle of the night, Ffion had started shouting for the TV to be put on.”
Despite the huge improvements, the once fiercely independent and active schoolgirl still had a difficult journey ahead of her.
She began a rigorous 12-week neuro-rehabilitation programme which included physiotherapy, occupational health and speech and language therapy.
With that support, Ffion, now 12, slowly began to regain her speech and movement and with it, a bit of her independence.
Leigh, who is now in remission from non-Hodgkins lymphoma, added: “The neuro-rehab team were brilliant. They spent time with Ffion in the hydrotherapy pool, taught her to navigate steps and pavements in the garden and even took her to the local fruit stall to practise her life skills. She had everything thrown at her in that 12 weeks but she took it all in her stride.”
After four months on the Jungle
Ward, Ffion was finally able to go home, but still faces huge challenges.
Leigh and James, who also have a 23-year-old son called Ewan, admit it is impossible to say if Ffion will make a full recovery but she is continuing to make progress and is now back studying at Cyfarthfa High School with one-to-one support.
They are now backing a campaign which aims to raise £1m for the Jungle Ward to improve its environment and facilities.
James said: “We can’t fault the care Ffion received while she was on Jungle Ward and the staff there do a great job with what they have.
“But for us and many of the other families there, the stays are long and difficult.
“Having new equipment and facilities through the Jungle Ward Appeal will help make life so much better during massively difficult times.”
■ To donate to the appeal, visit www.noahsarkcharity.org/junglewardappeal