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CLDF BLOGSLiver Stories

Family fun weekend gives hope to Scottish families affected by childhood liver disease

By July 30, 2018 No Comments

Scottish families whose children have liver disease got together last weekend at a special event at PGL Dalguise, organised by Children’s Liver Disease Foundation (CLDF).

At the CLDF Family Weekend, which was part funded by Tesco’s Bags of Help scheme, families made the most of the sunshine, taking part in a range of activities including zip wire, archery and a treasure hunt. For many, including the Booth family from Edinburgh, it was their first opportunity to meet other families affected by childhood liver disease.

Seven year old Anna Booth was diagnosed last year with the rare liver condition, portal hypertension. A year previously, doctors had diagnosed pancytopenia, a condition which means all her blood cells are low, after her mother had taken her to the GP because of nosebleeds and easy bruising. The past two years have seen a succession of tests, hospital appointments and admissions (including a trip to the specialist liver unit at Birmingham Children’s Hospital) so Anna’s parents, Clare and Mark, jumped at the chance to have a family weekend of fun with other people who would understand what they are going through.

“We had a great time! It was nice to unwind, and just have fun, as a family,” says Clare. “The best thing about it for us was being able to talk to people that know what you’re talking about but also understand your worries and experiences. The girls loved the whole weekend. Anna particularly enjoyed the zip wire, and her younger sister Rachel loved the nature walk and low ropes course. They also loved the campfire. And the bunk beds!”

“We don’t know what Anna’s future will be like, but now that I know there is a support network out there, and that we’re not the only people going through something like this, I feel a little better about it.” 

CLDF Chief Executive, Alison Taylor, explained: “We are the only UK charity dedicated to fighting all forms of childhood liver disease and supporting families is a key area of our work.  Because liver disease in children is rare, it can be isolating. This weekend’s event was a great opportunity for families in Scotland to get together outside a hospital setting, have fun with their children and help support each other. We would like to say a particular thank you to Tesco who contributed to the costs of this weekend through their Bags of Help scheme.”

If you have been affected by childhood liver disease and would like to know more about how CLDF could support you, contact them on 0121 212 3839 or email info@childliverdisease.org.

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