Butterflies are everywhere. Some of us wear them subtly on charms around our necks or dangling from our ears. Others wear t-shirts or sunglasses emblazoned with them. And then there are those who wear their butterflies more permanently, tattooing their skin with these winged creatures. No, we are not lepidopterists (scientists who study butterflies) or even butterfly enthusiasts. We are mothers -- mothers who have come together from around the country with a shared experience -- we have children whose skin is as fragile as a butterfly's wings. Our children suffer from epidermolysis bullosa (EB) and this is our summer vacation.
EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth. EB is characterized by blisters and erosions all over the body that result from minimal friction. It is painful. Imagine the pain you feel when walk around a new pair of heels and end up with blisters on your feet. Now imagine that feeling all over your body. For an individual with EB, even the most delicate touch can cause the skin to tear apart, blister, and shear off the body; hence, the association with butterflies. My "butterfly" is my six-year-old son, Jackson. His skin may be fragile, but his spirit is not.
Summer is the season when families that are affected by different diseases, particularly rare diseases, gather at patient care conferences. Here we come together as a community to discuss how best to manage the disease, learn about the current state of research, and meet other families dealing with similar challenges. Best of all -- at least in my opinion -- you get to share a glass of wine with the only people who actually know what it is like to walk in your shoes. As you might imagine, there is a great deal of bonding that goes on at a patient care conference.
It is easy to pick out the individuals with EB at the conference -- they are the children and adults whose bodies are covered in bandages and skin that is scarred. It is also easy to spot their families checking into the hotel where the conference is held -- they typically travel with an insane amount of luggage -- suitcases, plastic bins, and coolers overflowing with bandages, sterile dressings and, in many cases, feeding tube supplies as EB affects the body inside and out. My husband and I always joke that when we travel with Jackson that the housekeeping staff must wonder, "What is going on in this room? It's like a triage center in here."
I left Jackson home when I traveled to the conference this year. Like many six year olds, Jackson likes to hang by my side in unfamiliar settings, and I didn't want him to hear about all the complications that can go along with having EB (anemia, mitten deformity, and squamous cell carcinoma to name just a few). There were other moms like me who came without their children. For some, this will be their one vacation of the year ironically spent with doctors and researchers learning how best to care for their EB-affected child.
Leaving Jackson at home enabled me to get the most out of the terrific line up of experts at the conference. It was particularly rewarding to hear about the great progress currently taking place in research as I co-founded the Jackson Gabriel Silver Foundation in 2010 with the mission of advancing treatments and ultimately finding a cure for EB. Our foundation raises over $1 million a year for research and has helped to fund much of the advanced research that was described at the conference.
As gratifying as it was to hear the impact the Jackson Gabriel Silver Foundation (JGSF) is having on driving research forward, the best part of the conference for me was spending time with my fellow EB moms in the evenings. I have extraordinary friends in my life who have loved me and my family through some pretty challenging times. Yet, none of them (lucky for them) can understand the feeling of watching your child's skin fall off or the feeling of blaming yourself when the adorable new pajamas you bought him tore the skin off under his armpits and now you have to figure out how to bandage them. My EB mommas can. These ladies who I typically only get to "hang out with" on Facebook are all now finally in one place at the same time. Wearing our butterflies, we spend hours sharing stories, frustrations, milestones attained and milestones missed. Some of them I am meeting in person for the first time, others I have not seen since the last patient care conference two years ago. No matter, we are here together now spending our summer vacation focusing on EB -- the condition that none of us can escape.
It is a mother's job to nurture and to keep her children safe. These women share the same challenge I do -- keeping a child safe whose skin can tear off from the simplest and most common of activities. Tooth brushing, bathing and feeding can lead to painful and long-lasting wounds if not done gently. They walk the same tightrope that I do. Sometimes caring for my butterfly, Jackson, means causing him pain in order to make a blister or wound better. It is the part of parenting a child with EB that no one should ever have to experience. Many of us have other children who are not affected by EB. It is astounding how much simpler it is to care for them. Over a glass of wine, we gab about that, too.
The next conference will take place two years from now. Some of us will be lucky enough to attend again; others will not. The harsh reality of EB is that it is often fatal in the childhood and teenage years. Until then, we will wear our butterflies in solidarity and support each other through the ups and downs of life as an EB mom. For my part, I will keep fundraising for the Jackson Gabriel Silver Foundation and advancing research so that one day, all of our butterflies can fly free. I hope you will join me.