Imagine waking up in the middle of the night to the sound of a crying child who has painful blisters that have been part of their life since birth. The slightest friction produces agonizing wounds that can cover up to 75% of their frail bodies. You want to hold them and comfort them, but you can’t. They are affectionately referred to as “Butterfly Children” because their skin is as fragile as a butterfly’s wing.
A cure for EB means no child will have to endure the constant pain and suffering caused by this devastating illness. Families of Butterfly Children get the support for the daily care they require from debra of America programs and services that have been made possible in part due to Team Butterfly funding. Until there is a cure for EB, Team Butterfly will continue to support and provide for EB families.
You want to hold them and comfort them, but you can't.
Every blister is punctured in several places with a sterile blade or needle and is then drained of all its fluid.
A typical bandage change for a child with EB is extremely painful, takes one to three hours and often involves the assistance of a visiting nurse. New bandages must be applied one limb or body part at a time to protect damaged skin and reduce chances of infection from oozing wounds. Sometimes, bandage change’s can even occur more than once per day. This process is very time consuming and costly, which puts an additional burden and increased stress on the parents and family of a Butterfly Child.
For many children with EB, blistering in the oral cavity, fused oral vestibules and a smaller than normal mouth opening make it impossible to brush or floss their teeth. Parents or healthcare caregivers must gently clean the child’s mouth by hand, which is a delicate, painful, and often time-consuming process.
Gastronomy Tube Insertion
Many Butterfly Children have a gastrostomy tube inserted into their stomach for the delivery of supplemental nutrients, fluids and medications because blisters in their esophagus make it difficult for these children to swallow.