This week is National EB Week (October 25 to 31). “EB” stands for Epidermolysis Bullosa, a group of genetic conditions that result in easy blistering of the skin. EB may be classified into 3 types depending on how the condition manifests: EB simplex, junctional EB and dystrophic EB. Patients with EB simplex show the least symptoms. Sometimes, they may not develop symptoms until they start to crawl or walk. Junctional EB (formerly known as lethal junctional EB) is the most severe out of the 3 types, and patients with junctional EB have a low survival rate. EB affects 1 out of every 20,000 people. As medical technology develops, EB patients have a better survival rate and quality of life. Children with EB are often referred to as “butterfly children”, not because they look like butterflies, but because their skin is fragile like butterfly wings.
From the moment they are born, these children suffer from skin damage, blisters, adhesion of their fingers or toes, having their nails fall off, shrinking of their joints, skin infections etc. In serious cases, skin damage or peeling may even occur while the fetus is still in the mother’s womb, resulting in partial loss of skin on the children’s limbs after birth. Children who are fortunate enough to survive face lifelong struggles with skin that is easily blistered and damaged, and have to implement strict skincare routines. There has been some successful treatment of the condition via bone marrow transplantation, but due to the expensive cost of such treatment, there are not many precedents and the effective treatment of EB is still a way off.
Some may think, why prolong the suffering of such children? It’s not an unusual thought, but life is priceless, full of surprises and unquantifiable – who are we to put a price on a child’s life and decide that such a child’s life is not worth living? Looking at the face of this smiling child, our doubts and fears are erased. We choose to give him a future.
This little guy with a sunny disposition and a smile up to his ears is a 1 in 20,000 butterfly baby. Although his skin develops new blisters every day, his warm smile never leaves his face. Here is his story. Shortly after the Spring Festival in February this year, this little guy with a 1 in 20,000 EB condition came to Dew Drops seeking help for his heart defect. Prior to his case, there has never been a successful precedent of such a young baby with EB undergoing open heart surgery here in China. Unwilling to give up despite the crushing odds against him, Dew Drops asked for and received generous help from all around the world for the little guy, and good news ensued. After more than 5 months of preparation and effort, this special butterfly baby entered the operating room in July this year and received a record-breaking heart surgery. The little guy beat all odds to recover day by day with the blessings and hope of everyone, starting a new life journey full of hope and strength!
In conjunction with the International EB Week, little Ping Ping, a 1 in 20,000 butterfly baby with a congenital heart defect, hereby represents all EB patients to thank all of you who have helped to care for and raise awareness of EB. May the richness of life be experienced by these precious butterfly children!