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Supporting families facing up to Cystic Fibrosis

Laurie Howard, the director of the Cystic Fibrosis Holiday Fund (CFHF) has spoken of the “strength and dignity” shown by families bringing up a child with CF.

The charity works to send families, many of whom have never been able to take a break before, on a holiday that gives them a chance to escape the stresses and strains of daily life with CF.
Laurie described the collaboration with CLC World Charity Holidays, which started in 2016, as “a wonderful thing”.

“There’s not much downtime together as a family, there’s not much time for them to relax and that’s why the Family Revitalise programme we are running with CLC World is so important.”
The company’s support, she says, means they can send families away on longer breaks.

And the feedback from the families when they return from their trips has become one of the highlights of her job.

“The thing that stays with me most is their strength and dignity in dealing with something so all-consuming, that takes hours of their time every single day and yet they have learnt it’s normal life.”

Their attitude, she said, is “it’s just what you have to do, and the way they just get on with it, I find it inspiring.”

Laurie was speaking on a visit in May to CLC World who were hosting a holiday break for the Ketley family-of-four.

Layla – the three-year-old daughter of dad Andy and mum Jo – has CF and endures a rigorous daily routine of medication and physiotherapy.

She was diagnosed with the condition at just two weeks old.

Andy said: “It’s pretty hands-on, it’s constantly monitoring her medication, what she eats, making sure her breathing’s functioning right and daily physiotherapy.”

The holiday with Layla and her older brother Liam, was a chance to go to the beach and “just chill”, said Jo.

She added: “We can get away from the day-to-day stuff at home and just sit by the pool. It gives us time to spend together, away from work and schools. It’s just been brilliant.”