KicKee Pants' EB Awareness Donation Campaign Starts Now!
What is EB? Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™
Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complicationscan be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.
As many of you know, giving back is a very large part of our company mission. We try to do this as often as we can. Whether it be substantial NICU drop offs or a simple and small gesture to a family in need, it is extremely important to us.
One organization in particular has been at the forefront of our efforts for many years. The Butterfly Fund, founded by Laurie Sterner, is truly making a difference. This non-profit helps to raise awareness, funds and overall love and support for families who suffer from EB (epidermolysis bullosa), an unimaginable disease in which the skin of an individual is as sensitive as butterfly wings, coining the term "Butterfly Children".
We were made aware that our products are one of the very few that these babies and kids can wear comfortably. It is such an honor knowing our products can provide comfort to these Butterfly Children who suffer tremendous pain on a daily basis. After hearing this we knew we had to help, and have tried our very best to do so over the years so far. In 2013 we created Butterfly Babies by KicKee Pants, a collection designed with these kids in mind. All seams sewn on the outside for maximum comfort. 80% of all proceeds from this collection goes to The Butterfly Fund to help with their amazing and ongoing efforts to help families with an EB sufferer.
I watched a documentary years ago called “The Boy Whose Skin Fell Off.”
It was about the life and death of a man in England named Jonny Kennedy. He endured a life of 36 years with a horrific disease called Epidermolysis Bullosa also known as EB. The documentary was gut wrenching; yet this man's attitude and sense of humor showed through the heart wrenching reality of this horrible disease. I remember telling my own children that “You never have a complaint in this world’ knowing that some people live with this unspeakable pain and still smile through it all. Jonny’s story, in short, changed my life.
Speed ahead to 2008 when an article appeared in our local paper about a young man named Cody. I knew Cody when he attended school with my children – he had this horrible skin disease that looked like he was burned. I didn’t know what he had but he was just the cutest little thing with this very sad disease. In the article there was the word for what Cody had...Epidermolysis Bullosa, also known as EB. All this time, Cody had this horrific disease – the same one that Jonny did.
After several years of research, I came to meet so many families who themselves had EB or had a child with it. My heart was touched beyond words...something to this day, I cannot fully explain. Maybe it’s the unspeakable pain and suffering that EB causes, or maybe it’s the smile on these children’s faces through it all...I really don’t know. I met someone recently who said to me “ I did not choose EB, EB chose me”...though I didn’t know this person well at the time, those words He spoke, were taken directly from my heart~
I’ve been involved in many organizations and donated to more than I can remember. Everyday, we as people have struggles and hardships. But everyday, I think about another family, who is living a life with TRUE struggles, the kind of struggles most of us cannot even begin to imagine. I cannot fathom the sight of seeing my child in pain, fighting for his or her own precious life and experience the unspeakable pain of losing my child to some horrific disease or catastrophic event. THIS is the reason for The Butterfly Fund.
It’s for all the families who live this reality and to get all the other families involved because it’s the right thing to do~
I may be the founder of the Butterfly Fund, but I feel more like the “messenger” of it.
To put it simply, I cannot do this alone and I never started The Butterfly Fund to prove anything to myself. Only with your help, can we make a difference in the lives of children, who are at the moment, fragile, as butterflies and I know, with all that I am and all that I believe in, we can and will do this
~Laurie Sterner, Founder
Laurie, KicKee Pants and our amazing community are here to help! KicKee Fans, join us for EB AWARENESS WEEK! Help spread the word about this awful disease and if you are feeling extra generous participate in our EB Donation Campaign too!
Notice these little ones are still smiling? The courage behind these tiny faces is immeasurable. They can teach us a thing or two :) Thank you for all of your help and support! Let's show these families that we are here for them, supporting and sending lots and lots of KP LOVE!