Beautiful baby Pippa can never be cuddled
WITH her tiny body blotched with blisters, Pippa Atkinson is constantly dosed with morphine to help her cope with the pain.
The Peppa Pig loving 14-monthold was born with incurable epidermolysis bullosa (EB), which makes her skin come off at the merest touch.
At birth the youngster had no skin on her hands and feet.
“At six minutes old she was taken to intensive care,” mum Rhiannon said. “The following day Great Ormond Street came down. They had seen photos and thought she had EB.” The family had never heard of it. “It is a lifelong condition, but the heartbreaking thing was that there is no cure for it,” mum-of-two Rhiannon said. “That is the most painful thing. It breaks your heart every day.”
Rhiannon cannot even cwtch Pippa.
“She is learning that she can cuddle me but that I cannot cuddle her back,” said Rhiannon.
“She will snuggle into me and rest on my arm or shoulder, and I can lean toward her so that there is a bit of contact, and when she is ready she can move away.
“If I cuddled her and she did not want that, and pulled away, it would cause immense trauma to her stomach and back and everything else.”
It was five months before 30-yearold Rhiannon was even able to hold her daughter.
“Every day we face new obstacles,” she said. “For months she could only wear her clothes inside-out, as the seams caused her to blister.”
Now they are custom made without seams.
Every day Pippa has full dressing changes. These can last up to two hours. Her blisters are lanced, dead skin and scabs softened to remove them without damaging new skin underneath.
“Any kind of friction can cause new blisters to form,” Rhiannon said.
“Blisters must be lanced to prevent them splitting. Open wounds must be dressed with specialist non-stick dressings.
“Throughout the day any large blisters that form need to be lanced.” Pippa gets 50-60 blisters a day. “They are all over her body and inside her mouth,” said Rhiannon.
“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.”
To cope with the pain Pippa takes morphine, paracetamol and on – bad days – sedatives.
Rhiannon has to lance blisters on Pippa’s feet by cutting them with scissors because they grow so quickly.
“She becomes hysterical and it becomes an emotional rollercoaster and you have to switch off,” Pippa said. “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. 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.”
The family are permanently cleaning their home because of the risk dirt will cause infection.
“She has got blisters on her face, up her nose, in her mouth, on her back and legs, her arms, her bottom, her tummy, inside her ears, between her toes,” Rhiannon said.
“There is not a part of her body that does not have a blister or scab.”
Pippa’s condition leaves her susceptible to infections. Earlier this year she fought off Streptococcal A which can cause meningitis. She is battling that again at the moment, along with Streptococcal G. The infections makes it more difficult for Pippa’s body to deal with the blisters.
Rhiannon, from Ponthir, Cwmbran, gave up her job at Barclays to look after her daughter.
“I’m glad I know her so well that I can spot these infections now in a day or so,” she said. “But it is a really scary thought that I might not be here. What if I had a day off and she came down ill?”
The family are trying to raise £25,000 for medical equipment to look after Pippa. So far more than £5,000 has been raised on Pippa’s JustGiving page.
With the cash they are hoping to build an extension that will include specialist bathing and changing facilities for Pippa.
This week Rhiannon was left reeling when Facebook branded an image of her daughter “undesirable.”
She had sought to “boost” the image of Pippa’s blistered feet to raise awareness of their campaign after it received thousands of views on her “Please Help Pippa” page.
The social media giant sent her a message telling her she was not complying with its “health and fitness policy.” It said: “The image depicts a body or body parts in an undesirable manner.”
“I went back to them to say ‘That’s ludicrous’ and that we were trying to highlight my daughter’s condition,” said Rhiannon.
“Even after they reviewed it they were still not willing to change their minds.”
Facebook were contacted but had not responded at the time of writing.
To help visit www.justgiving.com /crowdfunding/pleasehelppippa