Description
Jackson's Fundraiser: https://www.gofundme.com/f/SupportJackson1
Jackson lives with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic condition that makes his skin so fragile that even gentle contact can cause it to blister, tear, and form painful wounds. He is also profoundly autistic and nonspeaking.
Together, these diagnoses create an extraordinarily difficult combination. During daily periods of distress or sensory dysregulation, Jackson can engage in self-injurious behaviors that unintentionally tear his already fragile skin and worsen existing wounds. Because Jackson is unable to communicate where or how badly he is hurting, his mom, Jess, is often left trying to determine what needs attention without being able to ask him.
Jess is a single mother and Jackson's full-time caregiver. His extensive wound and bandage care can take anywhere from three to eight hours every day. Jackson often struggles to tolerate this process, and at times his distress can result in injuries to both himself and his mom. Yet the wound care is essential to keeping him alive, resulting in a daily struggle.
Jess has been unable to find another documented case of someone living with Jackson's particular combination of RDEB and profound autism, leaving her without a roadmap for how to navigate many of these challenges. She does the best she can each day to understand her nonspeaking son, care for his wounds, manage his pain, and make sure he knows that he is deeply loved.