Eli and EB: A Patient Story
Eli needed our help from birth.
“He was born missing skin on his feet, almost both feet entirely. And then when they went to clean him after birth, they just rubbed other skin right off,” said Lindsay, Eli’s mom.
Eli has a severe case of Epidermolysis Bullosa – EB, for short – a group of rare genetic skin conditions characterized by extremely fragile skin and chronic blister formation. In the U.S., children with EB sometimes are called “butterfly children,” as their skin is as fragile as a butterfly’s wings. The disorder is thought to affect 1 in 20,000 babies born in the U.S., some of whom use Continuum Connect, a CHC Solutions program, to simplify the process of getting medical supplies shipped directly to their home month in and month out.
For Eli, a three-year-old Ohio boy who lives in a small town an hour north of Dayton, the disorder manifests itself in a daily ritual of bandaging – he is covered, from shoulder to toe, in non-stick bandaging and gauze several layers deep. Without Medicaid, for which the family qualifies due to Eli’s healthcare needs, Lindsay estimates they would spend $30,000 a month on wound care supplies alone.
Eli also has a G-tube – before his mother forced the issue with doctors of inserting one, Eli ate orally, which led to a throat blister that burst and several weeks of vomiting blood. He also suffers from anxiety due to painful bowel movements, which are better controlled now with the use of his G-tube.
“We now are able to ensure he gets medication that helps soften his stool and easier-to-digest formula made from real food,” Lindsay said.
For Eli and his family, the Continuum Connect program helps keep at least part of their lives, and the art of managing Eli’s symptoms, a little less complex. We carry a great and diverse selection of enteral/nutritional supplies. And Continuum Connect provides one point of contact for all that the family goes through in a given month.
“We go through Continuum Connect because you provide both wound care and nutritional supplies,” Lindsay said. “We really struggled finding someone that accepted Eli’s insurance for his feeding supplies until we found Continuum Connect. When I found out you could do both I felt so blessed.”
Lindsay understands how complex the health system can be; by day she is a mental health social worker and has worked the past seven years of her career in a hospital.
“I understand the frustrations of the patient’s I work with,” she said. “I have felt those same frustrations myself trying to get the best medical care that I can get for our son.”
But Eli isn’t letting his medical complexities stop him from living a full life.
“He doesn’t see himself as different. I’ve even asked him, ‘Do you want to know why you need to wear bandages?’ ‘No.’ He honestly doesn’t care. He’s a ‘go with the flow of life’ type of guy,” Lindsay said. “I feel [full-body bandaging] has helped him, in a lot of ways, just be a kid. He still blisters under his bandages. But there are days we’re shocked because he doesn’t blister. I can’t imagine how severe his skin would be if we couldn’t afford bandage supplies because he didn’t have the medical coverage for them.”
Brett Kopelan knows the narrative. The executive director of debra of America and President of debra International, a group of over 60 country specific organizations dedicated to funding research to fight EB, has a daughter with a severe type of EB.
“[It used to be] that you’d be lucky to make it into your mid-20s with severe EB, if you made it past the infections and all of the secondary complications,” he said. “Even 10 years ago, the prognosis was significantly different than it is now. I think we’ve changed that prognosis.”
Lindsay senses that hope.
She had miscarriages and one stillborn baby before Eli, her miracle son, was born Aug. 8, 2015. In Eli’s short life he has been involved in two clinical trials. One used topical Gentimicin ointment in an effort to grow Collagen VII, his missing protein that is needed to hold his layers of skin together; the other was a bone marrow transplant using his father’s bone marrow cells in an effort to systematically grow Collagen VII throughout his body. Eli responded poorly to both trials.
“I’m a fighter, and so is he,” Lindsay said. “I want him to feel the best he can feel. I want him to be the best he can be. I don’t want to get to the point where his wounds stop healing. Until there is a cure, or even better treatment options for EB, these white bandages and his feeding tube are our life savers.”