Tuesday, 09 August 2022

Five-year-old Ffion's first proper Christmas

LIKE most five-year-olds, Ffion Jones couldn’t wait to open her presents on Christmas Day.

LIKE most five-year-olds, Ffion Jones couldn’t wait to open her presents on Christmas Day.

But the festive period this year was even more special for her as she usually spends it in hospital.

Ffion suffers from chronic lung disease and has spent months at a time in hospital, often in the high dependency or intensive care units.

Her condition was caused by bronchiolitis, an infant respiratory infection, and countless lung infections she picked up as a baby.

She has been ventilated on several occasions and also needed a tube to help her ingest fluids for a year.

She needs a wheelchair to help her get around and finds her condition gets worse in the winter as the weather gets colder.

Ffion lives in Clifton Park Road, Caversham, with her parents Sue, 40, and Geraint, 41, an IT manager for Vodafone, and her twin sister Hannah.

Mrs Jones, who cares full time for Ffion, said: “The girls were born at 34 weeks and spent six weeks in hospital.

“Fjion was a big girl when she was born but it was when we came home that she became poorly with reflux and bronchiolitis.

“She was ill just after Christmas that year and we went into hospital the day after Boxing Day. She ended up in the high dependency unit.

“Hannah wasn’t allowed in the hospital. They were both so tiny and having one stuck in the hospital was hard. It’s scary because you have no control over what’s going on.

“Flitting back and forth between hospital and home was a strain. The bronchiolitis and reflux played against each other and Ffion wasn’t putting on weight.

“It was frustrating because there’s no simple answer and nobody knew what was going on. There’s no magic pill you can take to make you absolutely fine and a lot of family and friends didn’t understand that.”

Mrs Jones would spend her days at the hospital with her husband taking over at night while her mother Kay Howes cared for  Hannah.

Ffion recovered and was allowed to return home but the following winter she was back in hospital.

Mrs Jones said: “She was wheezy all the time because of the bronchiolitis and the second winter was even worse.

“She ended up in hospital for a few days a few times before the New Year but in March she got really bad with a chest infection and pneumonia and was rushed into hospital.

“She was in the high dependency unit before she got a bit better and was then moved to a ward. She came home but 10 days later was blue-lighted back in with pneumonia again.”

Ffion was moved to the John Radcliffe Hospital in Oxford and spent 14 days in intensive care. Twice she was put on a ventilator and doctors discovered she had vocal cord paralysis, where the windpipe doesn’t close properly, making it unsafe to swallow food and drink.

She was fitted with a tube from her nose to her stomach to bypass swallowing.

Mrs Jones said: “It was a horrific time. Even when she started getting better you kept thinking when will the next episode be?

“We were in for three months and by the time we got out it was June. I spent months by her side and hospital life is very isolated.

“When we came out it was very strange, it was like coming out of prison. It was winter when we went in and the trees were bare but when we came out it was warm and sunny.”

Mrs Jones had stayed at a nearby block of flats run by Ronald McDonald House, a charity which provides accommodation for families with children in hospital.

She had a bed, shower, cooking facilities and a phone so the hospital could call if there was a change in Ffion’s conditiion.

Mrs Jones said: “It’s an amazing charity and if we hadn’t had it I don’t know what we would have done. We would have had to sleep in the car. It was important that when Ffion was awake she knew we were there.”

Ffion weighed just 15lb when she was first put into intensive care at age two, only 9lb more than when she was born.

“That night was the worst ever,” said Mrs Jones. “You could tell how bad she was because she actually looked better ventilated. She was so thin you could see all her ribs when she breathed and she couldn’t sit up or do anything.

“Her breathing was so difficult that every day was the equivalent of running a marathon for her lungs.”

Ffion was finally discharged and apart from a few short admissions and infections, has spent her time since then at home.

She was able to attend St Andrew’s Pre-School in Caversham and began to make friends.

Mrs Jones said: “She’s such an amazing little soul. She’s had a lot of treatmentsm, including the nasogastric tube and we were so glad when that went.

“She gets tired quickly and can only manage about 100m without her chair. As she grows she will be less dependent on it. She loves her friends, she loved pre-school and the staff were all fantastic with her.”

Ffion started at The Heights Primary School in Caversham in 2014 but within two weeks she was back in the high dependency unit.

Mrs Jones said: “She went back in again last January and was transferred to high dependency immediately. She had pneumonia again and slowly got worse and worse. One morning we got a call to say she was going to intensive care and we should get there as quickly as we could.”

Ffion was put on a ventilator, where she spent two weeks. The family later found out she was allergic to one of the main drugs in her treatment.

Her condition means every winter and cold snap is a cause of worry for the family.

Mrs Jones said: “It’s very scary and our emotions go up and down. You feel like you are living life on the edge every winter. Even before she went back into intensive care the winters were horrific with sickness and temperatures. It was horrendous.

“Since she was in intensive care she’s had to build the strength to stand up and walk. It’s remarkable — you wouldn’t look at her now and think she’s ill.

“She’s getting stronger and is staying in school much longer. Nearly all of last year she spent more time at home than school and she really loves school and all her friends there. She just wants to be the same as her peers.

“Everyone at school gets on and looks after her. Karen [Edwards, headteacher of The Heights] even visited the intensive care unit and brought the school mascot Hector. How many headteachers would do that?”

Ffion has been put on a growth hormone as her condition and hospital visits stunted her growth. In the last year she has grown about 13cm, 10cm more than expected and is catching up with some of the smaller children in her class.

Mrs Jones says Ffion’s illness has been hard on her sister, especially when she spent three months in hospital.

She explains: “I’d never left Hannah before but when Ffion was poorly she didn’t see me for a week at a time. She wasn’t allowed in to the hospital because of germs.

“When I got back she had anxiety issues about me going out without her and sleeping issues but she has got a lot better since then.

“When Ffion came out Hannah wouldn’t let me go out, even to pop to the shops, but she has done so well. It knocked her back when Ffion had to go to hospital again but she coped.

“She’s older now and she loves school, which gives her some normality. She’s also very close with my mum, which is nice.”

Ffion loves animals and dreams of being a zookeeper one day. In the summer she hopes to spend a day at a zoo thanks to the Starlight Foundation, a charity which grants wishes for seriously ill children.

Last month she visited Downing Street for a Christmas party organised by the charity, where she met Chancellor George Osborne.

Mrs Jones said: “She loved the party and met celebrities including Geri Horner. The only think she didn’t like was the 6ft Dangermouse!”

“She’s got the wish coming up in May when she will be a zookeeper for a day and have a couple of days on holiday at the seaside. She also went to the summer fair with the Starlight Foundation in July. It’s an amazing charity which does everything it can to make sure the children have a special day.”

Mrs Jones raised more than £390 for the critical care team at the John Radcliffe Hospital with a sponsored run last year and followed that up by running the Henley Standard 10km in October and raising £750 for Ronald McDonald House.

While trips away are a nice distraction, Ffion’s condition means the family can never stray far from the hospital so holidays have to be carefully planned.

Mrs Jones said: “Ffion loves going to the zoo and on trips and as long as it’s not too far from the hospital we will try to do it. We do holidays based on how close we are to the hospital because they know her there and have such a good relationship.

“We had two Christmases practically in the hospital as well as two New Year’s Eves, Father’s Day, Mother’s Day and birthdays.

“We’ve spent so much time in hospital that this Christmas was really special. The girls had their grandparents over from Wales and we did lots of family things together at home. Ffion was so excited and happy and had such a lovely day.”

More News:

POLL: Have your say