The Kids

In order to better understand the lives of children affected by EB, we asked some of the parents of these children to send us pictures and stories of their little ones.

Please take a moment to learn about their daily lives and the struggles they bravely pass.

Cassie

The initial prognosis given to Cassie's parents at her birth was not good. They were told she probably only had about six weeks to live before blisters would compromise her breathing and kill her. Unfortunately, a lot of new EB parents hear this because there is so little information available about the disease. Biopsies later showed that Cassie did not have the form of EB that is most fatal in infancy, and that she instead had the dystrophic form.

While her parents were grateful to hear that she was going to live, they were also heart broken to hear that this form of EB could cause growth retardation, severe scarring, contractures and mitten deformities, and eventually death from Squamous Cell Carcinoma. Originally it was feared that Cassie would never be able to walk or play, she though has amazed everyone. She walks, runs, sings, dances, jumps on the bed, rides big wheels, and embraces life like no one else.

She has her bad times when she has too many blisters to function and spends a lot of time on the couch watching TV. She also has periods when blisters on her feet keep her from walking, but she always gets up and keeps going. She is plagued by constant itching, which keeps her awake a lot at night, but she still plays all day and doesn't drop till well past when mom and dad are ready to hit the sack. Cassie's mom says, "Baths and bandaging are difficult painful times and sometimes tend to dominate our lives, but how could you be unhappy when you wake up to this sweet little face every day?"

Faith

Faith was born June 11, 2000. She was born with no skin on her hands, feet, and parts of her legs. Doctors said that she would only have three to four weeks to live, but on July 3rd she was able to come home with her Mom and Dad Terri and Doug. Faith's parents said "this was the best day of our lives, being able to bring our baby home." Faith has to constantly have her feet and legs wrapped in bandages to keep her from blistering further.

Despite the constant pain, Faith is a happy and beautiful child. Her mother says, "Faith is such a happy baby and is such a joy in our lives. She touches the hearts of everyone she meets and even those that have never meet her, but have heard about her situation." Faith lives in Minnesota, and has a black lab named Bo, which has gone to live with her Grandma and Grandpa in Wisconsin. You will also notice from Faith's picture that she is on the home page of the EBTrek web site. We hope that her story and picture has as deep of an effect on you as it did on us.

Nicky

Nicky was born November 25, 1996. His parents are Silvia and Nick and he has an older brother Alex who died from EB. Nicky's Mom says that he is a "happy little kid when he's not hurting, and he hurts a lot, he's very special, and has a threshold of pain that is beyond belief. He truly is a brave little guy." Nicky loves Blue's Clues, Scooby-Doo, Toy Story, Elmo, Telletubbies, Pooh and Barney.

He can count to 100, knows the entire alphabet, and can spell so many words that his mother reports she has lost count of them. Nicky is a beautiful kid with blond hair and blue eyes. He has the Hallopeau Siemens, Recessive Dystrophic type of Epidermolysis Bullosa which causes him to blister and scratch very easily. Nicky's worse spots for blisters are his hands, feet, ankles and knees; he is almost always in pain. Internally, his mouth and esophagus are also in bad shape. He throws up often and bleeds daily. Nicky is a special little guy and we hope that he touches you in the same way he has touched us here at EBTrek.