Kindhearted ‘band of builders’ club together to help give mother a £43,000 home extension so she can cope with toddler who’s allergic to being touched

  • Rhiannon Atkinson’s daughter has rare condition called Epidermolysis Bullosa
  • Incurable condition causes Pippa’s skin to blister at lightest touch and is painful
  • Suffers from 60 blisters a day which need to be lanced, needs specialist facilities
  • Family had raised £35,000 towards the extension but a group of tradespeople dubbed the Band of Builders heard about their plight and finished work for free
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The mother of a toddler born with an incurable skin condition has spoke of her gratitude after a group of builders constructed a specialist extension on their house for free.

Rhiannon Atkinson’s daughter Pippa suffers from a rare condition called Epidermolysis Bullosa (EB) which means her skin blisters at the lightest touch.

The 20-month-old was born with 90 per cent of the skin on her hands and feet missing and spent the first 23 days of her life in a Special Care Baby Unit.




Rhiannon Atkinson has been tirelessly raising money to pay for an extension to the family’s home in Ponthir, Cwmbran, Wales, so they can install specialist facilities to help Pippa (right)

Ms Atkinson has been tirelessly raising money to pay for an extension to the family’s home in Ponthir, Cwmbran, Wales, so they can install specialist facilities to help Pippa.

The toddler, who suffers from 50-60 blisters a day that need to be lanced, needs a special changing area to make sure they don’t get infected. Her family also want to install a specialist hydrotherapy bath that US medical experts have advised could help her condition.

The Atkinsons had raised nearly £35,000 and started work thanks to the help of local builders, but a group of tradespeople dubbed the Band of Builders heard about the family’s plight and spent a week carrying out a chunk of the work they need completely for free.

Volunteer tradespeople from across the country travelled to Ponthir to put a roof on a new two-storey and single-storey extension that the family have built that will be the home for Pippa’s new facilities.


Volunteer tradespeople from across the country travelled to Ponthir to put a roof on a new two-storey and single-storey extension that the family have built that will be the home for Pippa’s new facilities




The 20-month-old was born with 90 per cent of the skin on her hands and feet missing and spent the first 23 days of her life in a Special Care Baby Unit

Put up by a local pub, the group – some of whom travelled from as far away as Sunderland – each gave up their time to carry out a total of around 46 man days of work completely for free.

They finished their work on Saturday, handing it over to Rhiannon and husband Damian – himself an electrician – on the same day the nation celebrated the Royal Wedding.

‘Saturday was a massive day of celebration but for a slightly different reason for us than most other people’ said Rhiannon. ‘What the guys have achieved in a week is amazing and has saved us about £8,000 – that means we can do the garden and get on with some of the other work we need to do.

‘We’ve had so much support from local builders already but this was the real icing on the cake and has made such a huge difference. We can’t thank them enough.


Addam Smith, founder of Band of Builders, said: ‘As an organisation, we help tradespeople and their families when they need us – so when we knew Damian needed help for his family we were keen to do what we could’

‘Pippa’s loved having so many people around but she’s oblivious why they’ve been here. I can’t wait to explain it to her one day so she can understand how many people went out of their way to help her.’

The single extension on the back of the Atkinsons’ home will house a kitchen with wheelchair access if Pippa needs it, while the two floor extension will have a day room below and a bedroom and bathroom for Pippa above.

Band of Builders are set to return to Wales later this year to help install a specialist ‘Microsilk’ bath which has jets that can gently exfoliate Pippa’s skin.

Pippa’s condition is listed in the top 10 most painful conditions on earth and means she gets 50-60 blisters a day that each need to be lanced. The tot 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.

Addam Smith, founder of Band of Builders, said: ‘As an organisation, we help tradespeople and their families when they need us – so when we knew Damian needed help for his family we were keen to do what we could.

‘Each of the guys who met Pippa was moved to tears by what she has to go through every day and how she copes with it and still smiles. Helping her family and the local builders who have already been doing so much for them is the least we could do and it will be great to see Rhiannon eventually using these facilities that will really make a difference to them.’




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 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. 

WHAT IS EPIDERMOLYSIS BULLOSA?

Epidermolysis bullosa (EB) is a general term used to describe a group of rare, inherited disorders that cause the skin to become very fragile.

Any trauma or friction causes patients’ skin to blister.

It affects around one in every 50,000 people worldwide. 

Around 40 per cent of sufferers do not survive the first year and most do not live beyond five years old. 

The three main types of the disorder include:

  • EB simplex – where blistering occurs in the upper layer of skin. This affects 70 per cent of sufferers
  • Dystrophic EB – where blistering occurs in the upper layer beneath the skin’s surface, which affects 25 per cent of patients
  • Junctional EB – where blistering occurs in the lower layer of the inner skin, which is usually the most severe form of the condition 

Most cases are obvious from birth.

EB occurs due to faulty genes, which can be inherited or occur spontaneously. 

There is no cure.

Treatment focuses on relieving pain and treating complications, such as infections or skin cancer. 

Source: NHS Choices and the National Organization for Rare Disorders 

 

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