A toddler with an excruciating skin condition will have her home extended for free by a generous group of builders.
Pippa Atkinson suffers from epidermolysis bullosa, which causes her skin to flake off at even the slightest touch, with almost none left on hands and feet.
The 20-months old’s mother Rhiannon Atkinson can’t cuddle or even hold her daughter’s hands without leaving painful blisters.
Pippa Atkinson suffers from epidermolysis bullosa, which causes her skin to flake off at even the slightest touch, with almost none left on hands and feet
The 20-months old’s mother Rhiannon Atkinson can’t cuddle or even hold her daughter’s hands without leaving painful blisters
Her family wanted to extend their home in Cwmbran, Wales, to make it easier for Pippa to get around, but couldn’t afford the £8,000 bill.
Charity Band of Builders stepped in and rounded up 40 tradesmen from as far away as Scotland to complete the work free of charge.
The extension will have a big enough bathroom to do the agonising dressing changes Pippa must undergo every day, instead of in her bedroom.
‘Her anxiety level goes up in the bedroom because she never knows what is going to happen,’ Ms Atkinson told Wales Online.
‘So she [will] enjoy having a bedroom rather than thinking being in there will be the worst part of the day.
‘It’s really hard as a parent to see a 20-month-old child already experiencing anxiety.’
Her family wanted to extend their home in Cwmbran, Wales, to make it easier for Pippa to get around, but couldn’t afford the £8,000 bill
Charity Band of Builders (founder Addam Smith pictured right with friend Keith Ellick) stepped in and rounded up 40 tradesmen to complete the work free of charge
Band of Builders started in January 2016 when Mr Smith’s friend Keith Ellick was diagnosed with terminal cancer and dozens of tradesmen renovated his house
The extension will have a big enough bathroom to do the agonising dressing changes Pippa must undergo every day, instead of in her bedroom
The work will include a single-storey extension to the back of the house with a kitchen including wheelchair access for Pippa.
On the side there will be a two-level extension with day room and above that Pippa’s bedroom and the bigger bathroom.
Band of Builders started in January 2016 when founder Addam Smith’s friend Keith Ellick was diagnosed with terminal cancer.
A fundraiser amassed £70,000 and Mr Smith decided to use the leftover cash to landscape his garden, roped in 50 tradesmen, and helped him buy it off the council.
The charity now brings together builders to help out families in need around Britain, like Pippa and her parents.
‘I think she will appreciate all this as she grows up she will look back and see all the people who have gone out of their way to help her,’ Ms Atkinson said.
Pippa gets 50-60 blisters a day. She has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction
Mrs Atkinson now has to restrain Pippa when she dresses her in bandages to stop her catching any deadly infections – which goes against her motherly ‘instinct’
Mrs Atkinson said: ‘As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water’
Mrs Atkinson previously spoke about how she had to restrain Pippa when she dresses her in bandages to stop her catching any deadly infections.
She found it upsetting as it goes against her motherly ‘instinct’.
EPIDERMOLYSIS BULLOSA: EXPLAINED
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
The skin is missing type VII collagen – a protein that usually binds the top layer of skin to the bottom layers.
Any trauma or friction to the skin can cause painful blisters. In most cases, the symptoms of EB are obvious from birth.
It is caused by faulty genes inherited from one or both parents. There are many cases when both parents are carriers of the faulty gene without realizing it.
EB is rare – just one in every 50,000 children in the US has it, while it is believed that 5,000 people in the UK are sufferers.
There is no cure for EB so the treatment aims at preventing blisters becoming infected.
Dr Emma Wedgeworth, consultant dermatologist and British Skin Foundation spokesperson, said: ‘EB is a group of genetic skin conditions characterised by excessively fragile skin which leads to easy blistering..
‘It’s caused by an abnormalities in the building blocks of the skin, which means the skin is less able to withstand friction. Depending on the protein affected, EB varies enormously in severity.
‘Some types are life-threatening whilst some types can be relatively mild- albeit very uncomfortable.’
Pippa gets 50-60 blisters a day. She has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction.
As she grows, and develops the urges to crawl and walk, her hands, knees and feet constantly have to be bandaged, Mrs Atkinson said.
Pippa takes morphine and paracetamol to cope with the pain. Some days she needs sedatives to relieve her.
‘I am Pippa’s nurse and carer all rolled into one. In some ways when I am dressing her she must hate me because I am causing her so much pain,’ Ms Atkinson said.
‘But on the other hand, if she’s upset, I’m the person she looks for.
‘I dread the day when she can tell me to stop doing something because you always have to get her dressings finished.’
‘As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water.
‘They were red raw and she was whisked off to intensive care.
‘Being told your child has an incurable condition is incomprehensible, it broke my heart.
‘But then not being able to touch her, or cuddle her for five months was torture.
‘I’d never known anyone with this condition so it was a complete shock when we were told it was going to get worse.’
‘She now has blisters on every inch of her body – on her eyelids, in her hair, her mouth and up her nose.
‘So we have to clean the house at least 10 times a day, because if dirt gets into her blisters it can cause infection.
Mrs Atkinson stayed with Pippa and husband, Damian, 36, in hospital for 23 days as nurses decided the best plan of aftercare for their baby
Once she was discharged from hospital, Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months
‘Whenever she gets a blister me and Damian have to restrain her so that we can get the fluid out of her skin.
‘That goes against every natural instinct in your body – having to hold your baby down and know that you’re hurting them.’
Alongside all of the maintenance that the family have to endure to keep Pippa safe, it is also a struggle to let her do simple day-to-day things.
‘For months she could only wear her clothes inside out, as the seams caused her to blister,’ Ms Atkinson said.
Mrs Atkinson, who gave up her banking job to care for Pippa, said: ‘She is now nearly 14 months old and hasn’t started to crawl or walk yet’
Despite Pippa’s condition covering her whole body, Mrs Atkinson has noticed that she is slowly getting better.
Mrs Atkinson, who is now trying to raise awareness of the condition, added: ‘Luckily, we can cuddle her every day now as her EB has slightly improved.
‘Because Pippa’s condition is genetic, I’ll never have any more children just because of the risk.
‘I wouldn’t change her for the world and we are doing everything in our power to ensure she leads a long and happy life.’