Any parent’s nightmare is to see their child in pain. EB is our nightmare, as it inflicts a mixture of acute and chronic pain daily. Seeing Michael in pain daily is excruciating for all of us.
Bandaging is one of those “necessary evils”. Our only way to help protect and heal the wounds he has is to bandage him. The process is always painful but ultimately helps to prevent infection and continual trauma to a given area.
We still have not been desensitized to the screams of pain that happen daily as a result of EB. We have also not been desensitized to the disappointment on Michael’s face that comes from not being able to enjoy simple freedoms that other children experience without consequence. Freedoms like riding a bike, running, eating, bathing, giving hugs, etc. Regardless of EB, Michael is a happy and friendly little boy with a big heart. Our dream one day is to see him experience simple freedoms without consequences. With your help we will: Find a Cure. Heal EB.
- Ryan and Heather Fullmer, EBRP Co-Founders and Mikey's Parents