What it means to meet Mikey

You know those really good people, the ones who are determined to make the world a better place?  I’m not one of those.  I live in the Nation’s Capital – a beehive for the cause-oriented – so I know a really good person when I see one.  I have colleagues who tithed their babysitting money.  Who spent their college downtime standing up global nonprofits. Who mentor and tutor and build habitats for humanity.
I spent my babysitting money on ill-considered teenage clothing.  I spent my college downtime playing quarters.  And until recently, my adulthood has been, for all intents and purposes, volunteerism-free.  I had my reasons for studiously ignoring any need that wasn’t my own: too busy, too tired, too poor.  The usual.
Then I met Mikey.
Michael “Mikey” Fullmer
Mikey is a 9 year old with a rare disease called epidermolysis bullosa or EB.  This means he lacks the protein that binds layers of skin together.  Without that protein, the skin – external and internal – tears apart, blisters and sheers off.
For children with Mikey’s form of EB, searing pain is a fact of life and life expectancy is brutally short. EB is unrelenting. It takes hours of bandaging each morning to protect these kids from infection, but it can’t protect them from disfigurement as EB erodes and binds their limbs, or the near certainty that their lives will end before age 30.
Mikey’s a kid. He wants to do things. Normal kid things. EB makes his skin as fragile as ...

Source: Disruptive Women in Health Care - April 27, 2016 Category: Consumer Health News Authors: dw at disruptivewomen.net Tags: Advocacy Children Chronic Conditions Source Type: blogs