When A-Ling and her family first arrived at The Children’s Trust, her mum Noriko felt as though they were on holiday.
“We were surprised, like we were on a staycation with A-Ling,” says Noriko. “The environment here is very good, with so many trees. It’s really relaxing and all the staff gave us a warm welcome.”
Noriko and her husband Lo have three children – nine-year-old Shun Nok, five-year-old A-Ling and her identical twin sister A-Dong. The family moved to the UK from Hong Kong in 2022. They live in Nottingham with Lo’s parents and Noriko’s mum.
Noriko remembers A-Ling as a healthy baby. Of the twins, A-Ling was always ‘the cheeky one’. She entertained her family by putting things in her mouth and then theatrically spitting them out. “She always gave us laughter,” says Noriko.
A-Ling’s sudden illness
When A-Ling was four years old, she developed a fever. A few days later, Noriko and Lo were picking up their son from school when they got a call from A-Ling’s grandmother. A-ling had fainted.
Noriko and Lo rushed home, collected A-Ling and took her straight to their GP. A-Ling fainted again in the waiting room and her oxygen levels were dangerously low.
Noriko was scared. “We were like, what’s happening? Why is she dropping oxygen? Are we going to lose her?”
The doctors rushed to find an oxygen mask that would fit A-Ling. She was then taken by ambulance to A&E, where medical staff were waiting for her.
Noriko and Lo were told that A-Ling was having seizures and wasn’t responding to anti-seizure medicine. After two very tense and difficult days for the family, A-Ling was put into a coma and transferred to a paediatric intensive care unit in another hospital.
Noriko is tearful as she recounts this. “I was thinking, what would happen next? What if she will never wake up again? When we recall that memory, it is very hard to calm down, because her condition was very severe.”
Finding out about FIRES
After many tests, A-Ling was finally given a diagnosis: she had developed a neurological disease called Febrile Infected Related Epilepsy Syndrome, or FIRES.
“I was heartbroken, because I Googled all night and found that FIRES is a very rare disease,” says Noriko. “It only happens in one in a million cases. I read one in 10 patients die and three in 10 have a disability. But I was determined. I told the doctor I didn’t want them to only save my daughter’s life. I want my daughter to be fully recovered.”
The right combination of treatment helped to stabilise A-Ling. She was in an induced coma for four weeks. “When the doctor woke her up, she was just like a baby again,” says Noriko. “She needed to re-learn eating, drinking, sitting, everything.”
Adjusting to a new family life
A-Ling spent six months in hospital and made progress every day. When she got home, life looked very different for the family. A-Ling was no longer getting the intense therapy she’d received in hospital and Noriko felt she was regressing. And at night, no one was getting much sleep. A-Ling shared a bed with her parents so that they could act quickly if she needed support.
“We needed to be with A-Ling 24 hours because of her oxygen levels,” says Noriko. “It was hard for us to have a family outing because we worried about A-Ling. So I took the other two children out for activities and my husband mostly stayed at home with A-Ling. It felt like we were a separate family.”
Progress at The Children’s Trust
Everything has changed again for the family since they arrived at The Children’s Trust – but this time for the better.
For starters, everyone is getting more sleep. Noriko and Lo take turns to stay overnight with A-Ling in her room in Maple House (which has her name on the door, cartoon characters on the wall and family photographs dotted around to make it feel like home.) They’re supported by our 24-hour nursing team.
A-Ling has a busy schedule of rehabilitation, including daily physiotherapy and speech and language therapy three times a week.
“A-Ling is doing really, really good here,” says Noriko. “The progress is so quick because they have this super-good equipment that you cannot find anywhere else in UK. It really helps patients a lot.”
Talking, walking and jumping
A-Ling spoke both Cantonese and English before she became unwell. Currently she’s communicating with help from a ‘now and next board’. There are pictures of activities on each side of the board and A-ling can point at what she wants to do next.
She can also say short sentences like ‘Ling Ling eat’ and ‘Ling Ling want.’ Noriko is confident that her daughter’s speech will continue to improve. “Our goal is that she can say a full sentence, with a subject, verb and object.”
When A-Ling first arrived, she practised walking in the soft play area using a ceiling hoist and a harness. Noriko will never forget what happened next.
“We removed the harness and she walked in her first week here!” she remembers. “We were so surprised at that.”
A-Ling is at her happiest when she’s splashing about in the hydrotherapy pool and jumping on the trampoline. In fact, she’s jumping whenever she gets the chance. “When we went outside to walk, she starts jumping again! She is so excited to regain that ability.”
And Noriko couldn’t believe it when A-Ling got on a trike and started pedalling. “I didn’t imagine that. She is really amazing.”
Quality time with family
A-Ling and her parents will stay at The Children’s Trust for 12 weeks. This could have been a long time away from the rest of the family but, to Noriko’s surprise, they’ve been able to visit.
“The Children’s Trust provides accommodation not just for us, but our family too,” says Noriko. “We didn’t expect that Shun Nok and A-Dong could come for school holidays. The therapists say it’s good for them to join in sessions with A-Ling, so that when she goes home, they will know how to play with her.”
A new goal: finding a cure for FIRES
Noriko hopes that when the family returns home to Nottingham, it won’t be long before A-Ling can go back to school part time. And Noriko will be using any precious spare time she can find to raise awareness of FIRES.
“If anyone is really unlucky to have this illness, I want them to be like A-Ling, to be a survivor, to be successful,” she says. “The goal for me and other FIRES families is to find a cure.”
In the meantime, Noriko will never forget the care and support the whole family has had from The Children’s Trust.
I can say that this is a once-in-the-lifetime experience. Even though it’s a short period of time, it’s unforgettable, because we enjoy so much care here.
To raise awareness of FIRES and the need for more research, Noriko has created a Facebook page about A-Ling’s experience.
