Pippa is a happy child with a painful disorder
Cwmbran, South Wales mom Rhiannon Atkinson is proud of her 14-month-old daughter because she’s facing odds that most people will never have to deal with. The child named Pippa was diagnosed with epidermolysis bullosa (EB) when she was born. The rare skin condition afflicts about one in 50,000 people. Pippa’s genetic condition causes he skin to blister and peel constantly because her body doesn’t produce type VII collagen which binds the top layer of her skin to the other layers. The slightest trauma or touch can cause a blister.
Pippa’s mom has been working hard to raise awareness about the painful affliction using social media, but Facebook doesn’t want their users to see the reality of what Pippa is going through on a daily basis.
A Painful Existence
Pippa’s mom was devastated to learn that her baby would live in pain for the rest of her life. Rhiannon recounted the day that she learned about her daughter’s EB in an interview,:
“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.”
Pippa requires round-the-clock care and gets dozens of new blisters every day. Rhiannon must carefully bathe, moisturize, medicate, and clothe the child to mitigate her pain. The baby is just now getting to the point where she can enjoy very light cuddling from her parents.
Rhiannon explained, “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.”
Rhiannon took to Facebook to raise awareness about the condition and to set up the charitable organization Tree of Hope: Please Help Pippa to raise funds for Pippa’s constant medical care. The mom posted pictures of Pippa smiling even though her flesh is marred with dozens of painful blisters.
One photograph of her feet was deemed to be too graphic by Facebook who promptly removed it. Rhiannon was furious that Pippa’s feet were called “undesirable” and told that the picture may make people ”feel bad about themselves.”
Rhiannon talked about what she did next, saying:
“I went back to them to say that’s ludicrous and that we were trying to highlight my daughter’s condition. 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.”
Our Beautiful Daughter
Reacting to the fact that the photo was “undesirable” by Facebook’s standards, Rhiannon posted pictures of Pippa’s bedroom that looks more like a hospital room than a baby’s nursery. She wrote on her Facebook page, “This is bloody undesirable! Every inch of Pippa’s room stuffed with medical supplies, scrubs and hospital gowns hung on her door to prevent cross infection! Screaming because she’s already had 20 blisters lanced this morning.”
Facebook has not commented on their decision to take down the original pictures, but they haven’t removed any new pictures of the child. Pippa has an older brother, but Rhiannon has decided that she and her husband Damian are not going to have more children because they don’t want to have another child with such a painful affliction. She said about life with Pippa, “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.”
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