For most parents, the holidays are a time filled with family, friends and happiness.
While this is also true for mothers like us who have children with extreme medical needs, we have a special holiday wish -- that our children could experience and celebrate the season without debilitating pain for just one day. Oh the joy it would bring to watch our children tear open presents and run around at holiday parties without the fear of their skin falling off.
We each have a young son with a rare genetic skin condition called Epidermolysis Bullosa (EB), which makes every area of their fragile skin vulnerable to the slightest touch. Simple acts such as picking up our sons, pulling their pajama shirts over their heads, or even giving them a hug can have painful and irreversible consequences. These acts can cause their skin to blister and sheer completely off of their bodies.
Like thousands of parents of children suffering with EB, we are in a constant routine of waiting at doctors' appointments and surgical procedure rooms all in an effort to keep our boys' bodies as healthy as possible.
We devote hours every day to wrapping our boys in bandages and cleaning their sores. This dreaded ritual is currently all we can do to treat the open wounds the boys have all over their bodies, and to prevent new wounds from occurring.
As mothers, we play multiple roles in the lives of our boys: parent, advocate, nurse, educator and wound care expert. In a world in which most medical professionals have never encountered a patient with EB, we often find ourselves in the unexpected position of having to educate doctors on best practices for our children's care. Like many other special needs parents, we hope to reach a point at which we are no longer the "experts" on our children's condition.
We have also learned the hard way what it feels like to be told, as we sat in the Neonatal Intensive Care Unit staring lovingly at our newborns, that there is neither a treatment nor cure for this condition. And worse, that our children will likely never get to enjoy the normal childhood experiences of playing on a Little League team, swinging from the monkey bars or roughhousing with cousins during holiday get-togethers.
Worst of all -- we live with the reality that our children will be considered "lucky" if they live until their teens or early adulthood. It is this truth -- that our sons have an expiration date -- that spurred us both into action.
The EB community is a family. Over the years, first separately and now together as the EB Research Partnership, we have worked to fund research aimed at treating and ultimately curing EB. We have made a lot of progress, funding over $4 million dollars of groundbreaking work, but there is much more to be done.
The name "EB Research Partnership" explains what we do and how we do it -- as partners. Together we are able to amplify each other's strengths and accomplish more than we ever could have on our own.
We raise our hands together, adorned with butterfly bracelets and charms, and we raise our voices to tell our stories. All of our work is based on the hope of raising awareness and funds for research so that one day we will find a cure and heal EB.
We are hopeful that one day our holiday wish will come true.
To learn more about our plight, spread awareness, or to help raise funding to cure EB, please visit our websites at www.ebresearch.org.