Beau­ti­ful baby Pippa can never be cud­dled

Cynon Valley - - YOUR HEALTH - JAMES MCCARTHY james.mccarthy@waleson­

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.just­giv­ /crowd­fund­ing/please­help­pippa


Baby Pippa Atkin­son with her mum Rhi­an­non. Pippa has a skin con­di­tion which means she blis­ters at the slight­est touch

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