Posted on 10/05/2017 12:59:25 PM PDT by nickcarraway
Pippa Atkinson is in terrible pain every day - Facebook rejected an advert her mother wanted to place as having 'undesirable' pictures
With her tiny body blotched with blisters, Pippa Atkinson is constantly dosed up with morphine to help her cope with the pain.
The Peppa Pig loving 14-month-old was born with an incurable skin condition which makes her skin come off at the merest touch.
Her smiling face lights up when she plays with her toys and laughs with her mum, but at birth the little girl had no skin on her hands and feet.
At six minutes old she was taken to intensive care and the next day specialists at Great Ormond Street Hospital who had seen photos thought she had epidermolysis bullosa (EB).
The family had never heard of it but the diagnosis was right.
“It is a lifelong condition, but the heartbreaking thing was that there is no cure for it,” Pippa's mother, 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-year-old 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 she has clothes which 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.”
But 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.”
This is as close as Rhiannon can get to cuddling Pippa (Image: Peter Bolter)
Pippa at home with her six-year-old brother, Thomas (Image: Peter Bolter) READ MORE 'I’ve been invited on The Undateables three times' This young woman has been paralysed since falling on a night out 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 rollercoatser 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.
“It’s terrifying,” said Rhiannon.
“She has had Strep A twice. We are dealing with that this week and she currently has Strep G now. It gets internal and can cause organ failure and septicaemia. She had her first infection of Strep A in May this year. This is her second infection currently. And she has Strep G at the same time.”
The infections makes it more difficult for Pippa’s body to deal with the blisters.
“It switches just to fighting the infections and the rest of her skin starts breaking down,” Rhiannon, from Ponthir, Cwmbran, said.
“She gets more agitated and moves a lot more and that creates more blisters.”
Pippa has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction (Image: Please Help Pippa/Facebook)
As she grows and develops the urges to crawl and walk, her hands, knees and feet constantly have to be bandaged - when she started crawling after her mum popped off to make breakfast, Rhiannon said she could quickly see blood spots coming through her babygrow (Image: Please Help Pippa/Facebook)
Pippa gets 50-60 blisters a day and her house must be constantly cleaned to try and guard against infection (Image: Peter Bolter) Rhiannon 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 she says Facebook branded an image of her daughter “undesirable”.
She had sought to “boost” (advertise) pictures of Pippa’s blistered feet to raise awareness of their campaign after it received thousands of views on her “Please Help Pippa” page.
But she says the social media giant sent her a message telling her she was not complying with their “health and fitness policy”.
“The image depicts a body or body parts in an undesirable manner,” it said, saying adverts "may not depict a state of health or body weight as being perfect or extremely undesirable".
As examples, it used "close-ups of 'muffin tops', where the overhanging fat is visible", "people with clothes that are too tight" and "human medical conditions in a negative light".
It said "ads like these are not allowed since they make viewers feel bad about themselves".
“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. People have told us the images make them feel sick – that’s fine some people have nothing better to do than pick on a baby. But for a huge corporation to say that – that stunned me.”
Facebook were contacted but had not responded at the time of writing.
I know somebody with this, and it’s a horrible disease.
Cwtch is Welsh for cuddle or hug.
So Facebook's position is that this baby's condition should be considered just as "desirable" as healthy skin?
Why would any view "feel bad about themselves" upon seeing this? Wouldn't they just feel sympathy for the baby?
I went to school with a boy that had this. He had to stay in a wheelchair because he couldn’t risk someone bumping into him.
I donated £20 in UK funny-money to the family of this little girl. Imagine how it feels for that poor little girl to never have one of the greatest pleasures in life, a real good, hard hug.
My daughter cared for an orphan child, a female, in China who had this disease.
She told about another little boy at the orphanage who was severely crippled, who would actually do tricks that injured himself in order to make the little girl with the skin disease laugh. He didn’t care how much it hurt, as long as it made her happy.
They should try ice and witch hazel.
I’m sure they never thought of that. I’m sure no sufferer from this condition ever thought of that.
Why the nasty sarcasm?
There are many genetic types of EB, many of them sadly are severe although the least rare is fairly mild. Research to try to correct their genetic causes is ongoing. There have been both successes and deaths from bone marrow transplantation for some types. However the combo of temporarily having no immmune system while having multiple open spontaneous wounds increases the risk beyond most BMTs. As these kids mostly start with normal immune systems, measures to change just their skin would be better. Researchers are working on that. With lots of effort and good wound care (= expensive) many of those with the most discussed severe form reach their teens or beyond so this sweetie may have time for we doctors to become smarter.
You’re joking, right? You think a person whose child has a miserable skin condition - and all their medical personnel - never thought to try ICE or a simple disinfectant?
It works for those tiny blisters on the inside of fingers and toes that itch/burn so bad. Freeze a water bottle and apply, and, rinse with a little witch hazel/alcohol instead of excess hand washing.
Home remedies help with some things. I like tea-tree oil, myself.
We should coin an acronym for this media behavior (which also afflicts spineless politicians and administrators).
I propose Proactive Snowflake Defense (PSD).
Use: “In another case of blatant PSD, Facebook today banned the posting...etc.”
Perhaps another Freepers can come up with better acronym.
Seems to me that the conservative side has been rather slack recently in creating an alternative psychology (complete with definitions and terms) to label our opponents. Sure, we have BDS and TDS but do we have a fully developed pseudoscientific vocabulary with which to baffle, annoy, and perplex them? Have we exploited possible weaknesses and phobias?
WTF, really?
Chronic yeast infections under breast, I had to find my own treatment as medical didn’t work just made it worse. Turns out Dial soap with Tea Tree Oil, followed by hand sanitizer and Nystop the strongest anti fungal powder works.
INTRACTABLE PAIN PATIENT who will be denied the pain meds needed as more of this FAKE Opioid crisis is hawked by the FAKE NEWS. It just a money scam for cities, counties and states.
There are some biodegradable liquid camping soaps that might help you, I’m thinking in particular of Dr. Bronner’s with tea tree oil. I “discovered” Campsuds a while back and love their citronella, lavender and mint liquid camping soap. The green aspect doesn’t matter that much to me, but it smells so good and is an insect repellant. A $4.95 4 oz bottle lasts forever, that stuff is concentrated. You can wash everything with it, hands, body wash, hair, dishes, laundry, dogs. Great stuff.
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