To help provide specialist bathing and changing facilities for two-year-old Pippa Atkinson, who suffers from Epidermolysis Bullosa (EB) - an incurable condition that means her skin blisters at the lightest touch. Band of Builders provided labour and materials to help Pippa's family with a project they had already started to build an extension at their home in Ponthir, Cwmbran, Wales.
When electrician Damian Atkinson's daughter Pippa was born, she was missing 90% of the skin on her hand and feet and was diagnosed with Epidermolysis Bullosa - a rare and painful skin condition that means her skin blisters at the lightest touch. EB is a random genetic fault that affects every aspect of every day, from wearing a nappy, eating, wearing clothes even drinking. Those born with it have skin so fragile they are called 'butterfly children'.
Instead of going home to South Wales to meet her family, Pippa's was kept under close observation at Great Ormond Street Hospital, whilst her parents learned to lance her blisters, dress her wounds and handle her without causing further damage to skin.
Listed in the top 10 most painful conditions on earth, Epidermolysis Bullosa means Pippa currently gets 60-200 blisters a day that each need to be lanced and has to take daily morphine and sometimes sedatives to deal with the pain. Pippa's mum Rhiannon has to carry out daily dressing changes which can take up to two hours and she, husband Damian and Pippa’s six-year-old brother Tom have to constantly be on their guard for risk of infection that could make Pippa seriously ill.
Pippa's family had already raised more than £35,000 to build an extension at their home in Ponthir, Cwmbran, Wales, toinstall specialist bathing and changing facilities including a hydrotherapy bath that US medical experts had advised could help Pippa’s condition.
Band of Builders lent a hand to local tradesmen who were already helping the Atkinsons, providing labour for free and sourcing donated materials from major companies across the UK to help move the project forward.
In two phases over May and June, volunteers travelled from across the country to help roof the extension as well as installing the state-of-the-art ‘Microsilk’ bath which has jets that can gently exfoliate Pippa’s skin, giving her much-needed relief from the painful condition.
Pippa’s mum Rhiannon said the new extension would change the whole family’s lives, finally making it easier to help Pippa and manage her condition, and help from Band of Builders had helped them move the project forward quicker than they could have hoped.
She said: “We cannot thank Band of Builders enough for what they have done for Pippa and us as a family. Pippa’s new bathroom will not only make her life easier but mine too. They are an absolutely amazing group of wonderful incredible people and it was a pleasure to meet all of them.
“Pippa will grow up knowing what Band of Builders did for her, how accepting they all were of her condition and how she looks and what she goes through. No matter how tough things get for her she will always know there’s a Band Of Builders on her side. I hope one day she will change someone’s life in return for what they did for her.
“They came to fit Pippa’s roof and bathroom but Band of Builders didn’t just do that. They gave Tom time and confidence to realise what an important role he plays, they helped Damian open up, have a laugh and relax, and for me they made my family happy and gave us back time to enjoy. We’ll always be grateful.”
Bathroom installation - the specialist facilities not only help make Pippa more comfortable, but allow a hygienic environment to eliminate infection as far as possible. Just weeks after the installation of the Microsilk bath, Pippa's mum Rhiannon said it was already making a difference to the number of blisters.