Four-year-old Jakub from Hull and three-year-old Rufus from Bridlington are at increased risk of serious chest infections
The families of East Yorkshire boys living with cystic fibrosis have spoken about their fears around the Christmas season and their hopes of a special day at home – not in hospital. The genetic disease affects the lungs and can make ordinary winter bugs extremely dangerous.
Jakub, four, from Hull, was diagnosed with cystic fibrosis as a baby, at only four days old. Jakub’s mum, Julia, said: “One year, Jakub picked up an infection and had to be admitted just before Christmas.
“The doctors reassured us he would be home in time, but it was still such a tough moment for us as a family. The hardest part was feeling like we were missing out – decorating the house, preparing food, and planning to see family.
“There was even the worry that we wouldn’t be together at all. Luckily, he was discharged in time with just oral antibiotics, and we got to spend Christmas at home.”
This experience has led to Julia feeling anxious as the festive season approaches. She said: “My main worry is the risk of Jakub catching bugs or colds when we’re socialising. It’s especially tough at Christmas when people are gathering indoors.”
There is no ‘day off’ from cystic fibrosis, and holidays still need to be planned around treatments, physio, and eating the right foods. Getting a bug could mean missing it all.
Rufus, three, from Bridlington, spent the first three months of his life in hospital. “Cystic fibrosis was all consuming,” remembers his dad, Ben.
“We were so worried about his future; what would it look like? Would he lead a normal life?”
That time was filled with constant fear. But after a very long three months, they were able to bring their baby boy home – just in time for Christmas. “There was suddenly light at the end of the tunnel,” said Rufus’ mum, Alix.
In the years since, Rufus has started the medicine, Kaftrio, and it’s made a huge difference to his life. “He’s just a crazy three-year-old,” said Alix.
This Christmas, the family are determined to enjoy every second of it with their two boys. “Life was at a standstill but now we just want to live, to cram everything in, and make the most of it!”
They are very grateful for the drug that helped make this possible. Alix added: “It’s all about finding new medicine that works to help people live a full life with cystic fibrosis.”
According to the NHS, cystic fibrosis currently has no cure and can shorten the lives of people who have it. But thanks to modern treatments, “many people diagnosed with the condition today will live well past middle-age”, it said.
Julia, Ben and Alix have shared their stories as part of the Cystic Fibrosis Trust’s festive campaign. It aims to fund revolutionary research that can “turn worry into wonder” for everyone affected by cystic fibrosis at Christmas.
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