By allowing ads to appear on this site, you support the local businesses who, in turn, support great journalism.
Every time you touch this baby she blisters; This is what caused this HORRIFYING disease
4ae259f09355d68dc747db72d9030a04e98ed3dd35a358b9e1e5d9cb49a48131
'Not being able to touch her or cuddle her for five months was torture.' - photo by Lindsey Miller
Every mom dreams of the moment when she delivers her baby and the doctor hands her that sweet, perfect little newborn. That first moment when a mom gets to see the tiny human shes been carrying for nine months is incredible. She hopes her new child will be free of pain and stay out of harms way, because she loves them more than anything in the world.

But when Rhiannon Atkinson gave birth to her sweet baby girl Pippa she never could have imagined the heartache she would go through because of a rare genetic skin condition she was born with.

She was missing most of the skin on her hands and feet

When little Pippa was born, she was missing 90 percent of the skin on her hands and feet. She was constantly in excruciating pain, and the doctors diagnosed her with epidermolysis bullosa. According to Little Things, Whenever anyone touched Pippas skin a blister and tear would emerge.

Atkinson said that when Pippa was born it looked like her hands and feet had been dipped in boiling water. Atkinson was heartbroken.

Being told your child has an incurable condition is incomprehensible," Atkinson said. "It broke my heart But then not being able to touch her or cuddle her for five months was torture.

She couldnt hold her newborn

Pippa had to spend the first months of her life lying down on a pillow, and no one could touch her skin or she would feel extreme pain. She was eventually able to come home from the hospital, and her condition improved since her diagnosis. Her mom also learned how to clean her wounds and change her bandages.





Constantly caring for the blisters is difficult, but it was especially difficult when Pippa was still a newborn. Atkinson said she had to clean the house 10 times per day so the blisters wouldnt get infected and worsen.





Its not only blisters that cause problems

In a recent Facebook post, Atkinson wrote, EB is its own worst nightmare, friction causes blisters, blisters cause scabs and when those scabs start to loosen they cause blisters!





Intense pain isnt the only terrible thing about this condition. Because of her skin sensitivity, Pippa hasnt learned to crawl or walk, and shes 14 months old. Her mom wrote on Facebook, Seconds on her feet fully supported by me results in two blisters on her right foot and one on her left.





Theyre looking for a treatment plan

The family is doing everything they can to find a way to make their daughter more comfortable. Theyre looking into putting another room in their home to house a Microsilk bath, which exfoliates the skin to remove dead skin and scabs. They set up a JustGiving account to raise money for the expenses.

Until the family is able to add this extension, they will continue to care for Pippa and keep her pain under control. Theyre keeping a positive attitude, and wont give up hope until a treatment works for Pippa.



Sign up for our e-newsletters
From the book 'Outliers' comes proof that good health is more than just genetics
8ccd7d661f85d37c8298791c9a56bec6e0f8449d4aea5c09c6ffcf527854f186
Friends Jim Young, left, Mike Natale, Jeff Natale and Ryan Kiernan were on Greenwich High School football team together and Jim and Mike were captains. Jim, who was the youngest in Sherry Young's family, was welcome in the homes of the other three boys who still had siblings around and grandparents near. - photo by Sherry Young
As I look back on my life and the lives of others, both personally and in the reading I have done, I am convinced of the necessity of positive human contact in our lives. We are doubly blessed when we are able to make good friends or are a part of a family where we are accepted and loved.

Malcolm Gladwell in his book Outliers tells of a time in the 1950s when Dr. Stewart Wolf met a physician who practiced in the area of Roseto, Pennsylvania. Roseto was settled by a group of Italian families from Roseto, Italy, who re-created their life again in America.

This was in the 1950s before drugs and measures to prevent heart disease became important. In their conversation the physician said, You know, Ive been practicing for 17 years. I get patients from all over, and I rarely find anyone from Roseto under the age of 65 with heart disease.

Wolf was surprised by these words as, It was impossible to be a doctor, common sense said, and not see heart disease.

Wolf enlisted the aid of a sociologist and friend John Bruhn to help him. They found, There was no suicide, no alcoholism, no drug addiction, and very little crime. They didnt have anyone on welfare. Then we looked at peptic ulcers. They didnt have any of those either. These people were dying of old age. Thats it.

They checked into diet, genetics and possibilities of something in the foothills of eastern Pennsylvania but nothing made sense.

What they found was that Rosetans visited one another, stopping to chat in Italian on the street, say, or cooking for one another in their backyards. (Researchers) learned about the extended family clans that underlay the towns social structure. They saw how many homes had three generations living under one roof and how much respect grandparents commanded. They went to Mass at Our Lady of Mount Carmel and saw the unifying and calming effect of the church. They counted 22 separate civic organizations in a town of just under 2,000 people. They picked up on the particular egalitarian ethos of the community, which discouraged the wealthy from flaunting their success and helped the unsuccessful obscure their failures.

What they found eventually convinced the medical establishment to look beyond the individual and understand the culture people are part of their friends, families and town they came from. They determined that the people we surround ourselves with and the values of the world we inhabit have a profound effect on who we are.

Likely, this study could have been done with other ethnicities. However, my family's experiences with the Italian families in Connecticut ring true to the study. Our hungry and growing sons, especially our youngest son, Jim, who was left home alone with two beady-eyed parents, all had some memorable experiences being fed and loved in the Cos Cob multigenerational families. Proof of the African proverb, It takes a village to raise a child.

We live in an age when the contact we have with people often is on the internet, and many of us live among strangers. Unless we make the effort to reach out, we will become isolated, especially as we age. The Rosetan study is proof that reaching out and communicating may be good for our health.
Latest Obituaries