Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States. Children born with EB are called Butterfly Children because their skin is as fragile as the wings of a butterfly. They face severe wounds and extensive bandaging daily, and their life expectancy is cut drastically short. There are currently no treatments or cure for EB, and the current standard of care is an extensive daily bandaging process. Researchers are making strides in developing therapies and believe that a cure is within reach. And with proper funding, we can reach that cure sooner. Please consider a donation to our cause - all proceeds directly benefit the EB Research Partnership, the largest nonprofit organization dedicated to funding research aimed and treating and, ultimately curing EB. Join us too on March 7 and 8 as we take the Plunge for this very worthy cause.
We Plunge For Them
Meet Elodie: Elodie was born in July 2016 and within a few hours she took her first ambulance ride to a hospital 45 miles away. Elodie was diagnosed shortly with recessive dystrophic epidermolysis bullosa ("RDEB"). It took weeks and months to begin to understand what this diagnosis means for Elodie and for us. It means extensive daily bandage changes, it means a moment of fear every morning as we walk into her room to see what she has done to herself overnight. It means sharps containers in every room and needles handy to attack a blister at any moment. It means cringing when we see how other parents handle their children, mentally cataloging the damage it would do to Elodie. It means hearing our child in pain - every day, many times by our own hands as we change bandages and moisturize wounds. It also means that her life expectancy is 30. But what it doesn’t mean is that Elodie brings us any less joy. She is a smart, happy, funny little girl with a big imagination and an even bigger heart. She has begun to imagine what her life might be like without wounds and bandages, and we want to make that dream a reality.
Meet Sophia: 9-month-old Sophia suffers from one of the rarest and most severe forms of EB, generalized severe junctional EB. Her parents had never heard of this incredibly rare genetic condition, but soon became all too familiar with its devastating effects. Hours of bandaging and painful wound care have become a necessary daily routine for Sophia, and she has had to bravely endure several hospitalizations. Sophia has wounds across the entire outside of her body as well as within her mucus membranes, including her mouth, esophagus, upper airway, and digestive tract. Because of this, she is at risk of life-threatening infections and internal complications. Even despite all her pain and daily challenges, Sophia is a sweet, loving, smiley baby whose strength is an inspiration. She brings so much joy to her family and all who meet her. Like Elodie, Sophia is a tiny warrior who defies the odds every day.