They are called, “butterfly children.” These butterfly children earned their names for their fragile skin—said to be as delicate as the wings of a butterfly. The official name of their condition is called epidermolysis bullosa or EB. It is a rare and genetic connective tissue disorder where an infected child does not have the right proteins for their skin to adhere to itself and heal properly. Because of this, their skin can easily become wounded, blistered, and bruised.
Butterfly children can have skin that becomes like a chronic wound over time, and they often live in pain. This condition can be very limiting and even lethal for some. One out of every 20,000 infants are born with this condition and there is no treatment or cure. These children go through daily wound care which involves extensive measures to keep their wounds clean and bandaged, which can take several hours a day.
The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S. based nonprofit that provides all-inclusive support to the EB Community. It does this through funding research for a cure and by providing free programs and services for those with EB.
The debra of America website is dedicated to raising information and support for EB. On the debra main page is an inspirational video of a child with EB introducing himself and the important debra logo is visible on each page: “Because the cost of doing nothing is too great.”
The debra of America was started in 1980 by Arlene Pessar and her son Eric, who had EB. Though Eric died at the age of 24, throughout his life, he fought and advocated for the changes in the EB medical sphere and community that he wanted to see made available to him and others.
Eric testified before Congress six times in a decade to urge more research to be done for finding the cure for EB as well as creating legislature that created 5 clinical centers and a national registry of patients.
Arlene was frustrated with the lack of medical information on the disease as well, and wrote countless letters to nursing journal to get more information about EB. Soon, the debra of America was formed.
The debra of America soon had television, radio, and newspaper awareness and the organization sent their first newsletter to 100 people in the United States. Today thousands of patients, families, and health professionals get their newsletter regularly.
The debra website has resources for absolutely everyone, including those who have never heard of EB, those who are the parents of a child with EB, and those who are ready to get involved or donate to the cause.
The website is a resource for finding different programs for all who want to get involved or get more information and they have programs such as an EB nurse educator program, a wound distribution program, a care conference, and a legal aid program.
Throughout its 35 years, debra of America has remained committed to funding research toward a cure, while responding to the increased need to provide direct services to patients and their families.
Donate to the organization here and check out the debra of America website here.
