D’autres histoires

Emily’s Story

This Article was written by

Emily from Toronto, Ontario, Canada Age 12 who suffers from EB

for her school newsletter during EB Awareness Week October 24-30, 2005

Epidermolysis Bullosa is a rare skin disease that many people suffer from. I bet you have never heard of it before because it is very rare, there is not much research being done because not a lot of people know about it.

EB is a skin diseases that makes the skin cut and blister extremely easily, it’s because the skin doesn’t have elasticity that holds the skin together, (like glue) and without the glue the skin severs open. They call kids with EB “butterfly children”, because their skin is as fragile as butterfly wings.

People with EB go through more pain in one day then you will probable go through your whole life. Some people with EB can’t even walk nor do anything with their hands, and we do so many things and just take it for granted. We also complain about silly little things that don’t really matter and there are people that have much worse problems and don’t complain at all, it’s a way of life for them.

If you have EB you live life in a different way, in one way it’s amazing because every thing you have you feel grateful for because you think more about what you have not what you don’t. But on the other hand it is painful and have trouble doing things, there are lots of disadvantages.

This week please try to tell people about Epidermolysis Bullosa because the more people that know the more people might want to donate money for research or help out. With your help we will be able to win this fight against EB and help those children spread their wings and fly.

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Cry for help fromd EBra Poland for Roksanka

Roksanka has been sucessfully adopted!!!

Dear friends,

We are desperately searching for a loving home for 3-year-old beautiful little girl named Roksana. She was born with EB and for this reason her parents have abandoned her. Since that day, the hospital has become her home and although then can manage to take care of her wounds, there is no one there to take care of her physical and emotional development. For the past 3 years she has been living in the sterile hospital room isolated from other kids and the outside world. Because she never leaves her crib, she hasn’t learn to walk and because of the isolation, she hasn’t learned to talk. In the opinion of psychologists who have examined Roksi, she is very capable of learning these things with the strong support of a loving family.

Our organization DEBRA Poland is working very hard on educating the public about EB and fighting for the rights of people with EB. Unfortunately, it is very hard mission in a country with an estimated 800 cases and zero support from the government. For that reason,finding a home for Roksi seems to be impossible task.

Please help us in finding a family for Roksana. Maybe somewhere in DEBRA’s community there are parents looking for their little girl. Roksi qualifies for international adoption and DEBRA Poland will be more than happy to help them bring their daughter home. Thank you for your time and support.

Please forward all inquiries to Przemyslaw Sobieszczuk, President of DEBRA Poland.

Stowarzyszenie DEBRA POLSKA Kruchy Dotyk

Ul. M. C. Sklodowskiej 127/2/29, 41-949 Piekary Slaskie, tel./fax (+4832) 381-53-17, tel. kom. (+48) 504-262-871

website: www.debra-kd.pl
e-mail: debrapolska@debra-kd.pl