Band of Builders hit Wales to help toddler with rare incurable skin condition
A toddler born with an incurable skin condition is the latest person to get help from the Band of Builders, a group of volunteer tradespeople who help those in need across the UK.
Pippa Atkinson was born with 90% of the skin on her hands and feet missing and spet the first 23 days of her life in a Special Care Baby Unit.
The 20-month-old suffers from Epidermolysis Bullosa (EB), an incurable condition that means her skin blisters at the lightest touch.
For four months the tot could only wear clothes inside out because seams would cause her to blister and it was five months before mum Rhiannon could hold her.
Listed in the top 10 most painful conditions on earth, Epidermolysis Bullosa means Pippa gets 50-60 blisters a day that each need to be lanced and has to take daily morphine and sometimes sedatives to deal with the pain.
Rhiannon has to carry out daily dressing changes which can take up to two hours and she and husband Damian, an electrician, and Pippa’s brother Tom, six, have to constantly be on their guard for risk of infection that could make Pippa seriously ill.
The family are hoping to build an extension at their home in Ponthir, Cwmbran, Wales, where they can install specialist bathing and changing facilities including a hydrotherapy bath that US medical experts have advised could help Pippa’s condition.
The specialist ‘Microsilk’ bath which has jets that can gently exfoliate Pippa’s skin, can’t be funded by the NHS or council so the couple have raised more than £33,000 to make the much-needed changes to their home.
Band of Builders is helping the Atkinsons by providing the skilled labour to carry out some of the adaptations to their home.
From May 12th to 19th the first phase of the project will see volunteer tradespeople from across the country will provide skilled labour to prepare flooring as well as fitting a specialist bathroom including the Microsilk bath. They will also provide the materials and labour to roof the new two-story and single storey extension that the family have built.
Addam Smith, founder of Band of Builders, said: “Our aim is to help tradespeople and their families in their hour of need so when we saw that Damian needed a bit of a boost to help his family, we jumped at the chance.
“Damian’s been working night and day to try to make the adaptations that will make a serious change to Pippa’s life as well as earning a living. The family have done a great job of raising funds but they needed an extra boost so if we can provide the labour and some materials that will help them get their extension finished then hopefully it will make a real difference to the whole family.”
Pippa’s mum Rhiannon said: “We’re building a single extension to the back of the property which is for a kitchen that will have wheelchair access if Pippa needs that. The two floor extension will have a day room and above that Pippa’s bedroom and bathroom. Band of Builders will be helping us get a roof on as well as some of the specialist facilities we need.
“The work they’re doing would have cost us about £8,000 which means with the money we are saving we can do the garden and get other things back to the way they were.
“We’re all so grateful and excited that these guys are travelling from all over the country to help us. We feel blessed. Pippa’s oblivious to it all at the moment but one day she’ll be able to look back and see all the people who went out of their way to help her.”
The project is the latest undertaken by Band of Builders, which is currently applying to become a charity.
Last year the group built a sensory garden for a special school in Lichfield, Staffordshire, and installed a summer house for fellow tradesman Dan McIntosh who had been diagnosed with a terminal brain tumour to give him somewhere to make memories with his family.
Their latest project saw the group battle the ‘Beast from the East’ to carry out adaptations to the home of Sadie Jenkins in Hertfordshire.
The organisation was founded by Addam Smith, who carried out a project to renovate friend and colleague Keith Ellick’s home after he was diagnosed with cancer, enlisting help from tradespeople from across the country.
Pippa’s project will use some materials from Jewson, which awarded Addam with £50,000 on account in 2017 as part of its Building Better Communities competition.