Epidermolysis Bullosa (EB) Awareness Week for “Butterfly Babies”

Doctors call it the “worst disease you’ve never heard of”, which has caused me to wonder why that is. It affects one out of every 50,000 live births, so it’s relatively rare, but given the effects, it still seems it should be wider known. Maybe it’s because the mortality rate is so high, and in the most severe cases, babies often do not survive to their first birthday. Or, maybe it’s because it’s so devastating to see, news organizations and hospitals and others don’t want to share the photos. Whatever the reason, it is still surprising to me, because once you become aware of Epidermolysis Bullosa (EB for short), your heart is forever changed and people become advocates for awareness and finding a cure, even if they don’t personally know the babies and children (and even a few adults) affected by it.

Babies born with EB are often called “Butterfly Babies” because their skin is as fragile as a butterfly’s wings. They are missing the protein that binds the skin to the body, and the slightest amount of friction (even picking up and holding your baby) causes severe blistering and wounds, which often leads to infection. In the most severe cases, the inside of the mouth, esophagus, and stomach are also affected – exasperated by food itself. Because of the blistering and wounds, babies are wrapped, sometimes from head to toe, to protect the skin and prevent infections. But because of the body’s imperfect attempt to heal itself, many other problems can develop, including scar tissue. And, bandages must be changed regularly, often every day to every other day, which is excruciatingly painful. Not to mention the pain of bath time with open wounds. And learning to roll over, crawl, and even the friction caused by putting on clothes. It is a life filled with pain – both for the babies and for the heart of their parents and all those who love them.

But here’s what’s amazing – and what captures your heart – is the resilience and spirit of EB children and their families. When you read their stories – found on blogs, fundraising sites, and Facebook – you are touched by their smiles in the midst of all that pain, the joy they find in the simple things of life, the camaraderie and closeness of the families, and the spirit of community of those who advocate for awareness with the ultimate goal of finding a cure. One of the newest Butterfly Babies is Easton Friedel. You can find his story on Facebook – click “About” on his page at https://www.facebook.com/SupportBabyEastonFriedel. You are sure to join the other 47,000 readers of his page in loving this little guy and wanting to help him fight the fight against EB.

It is heartbreaking to realize there is no cure at the present time, but there is groundbreaking research occurring at the University of Minnesota (www.puckfund.org), Stanford and elsewhere. And while there are only four clinics in the country with dedicated services for EB patients, they are invaluable to the children and families who have very specialized needs for care. But, because this “worst disease you’ve never heard of” is so unknown, funding is scarce. Which is where we come in. I have become involved in a movement called “I Refuse” (www.irefuseeb.org). Based on a song by Josh Wilson, I Refuse works tirelessly to raise awareness for EB, because with awareness and passion comes funding for research to find a cure and to end the pain and loss caused by EB. What does “I Refuse” mean? It means that I refuse to stand by and wait for someone else to make a difference that I myself can make. It means that I refuse to let EB win and rob a beautiful baby of the life they are meant to live. It means that I refuse to allow lack of awareness to stop the progress made toward a cure. What could “I Refuse” mean to you?

What I hope it means is that you won’t refuse a special invitation from us. Our two Tropical Smoothie Cafes in Henderson and Las Vegas are participating in the international EB Awareness Week. It’s held annually the last week of October – the 25th through the 31st. We will have information in our cafes about EB, including cards that tell the stories of some Butterfly Babies. Our heart is simply to raise awareness, but we will also accept donations that will be sent directly to Pioneering Unique Cures for Kids fund (www.puckfund.org), which is out of the University of Minnesota and a division of the Children’s Cancer Research Fund. You can also donate without even visiting the café, simply by texting “TRIPP” to 50555 on your cell phone. A $10 donation will be added right to your cell phone bill. (Tripp Roth is a Butterfly Baby who lost his fight with EB earlier this year – to read his amazing story, visit www.randycourtneytripproth.blogspot.com). What’s great about donations to PUCK is that there is a grant to double every donation that comes in during 2012 – which means even more research toward finding a cure. (For your tax records, the 501c3 tax number is 41-1893645.)

"I Refuse" - EB AwarenessWhile we know many of our generous and loving customers will donate out of the kindness of their heart, because these babies mean so much to us we want to thank you for your donation by giving you a 99-cent smoothie on a future visit. Simply come in to the café during EB Awareness Week October 25-31, make a $5 donation or more, and receive your coupon. Also, we will be hosting a fundraiser specifically for Butterfly Babies on Monday, October 29, where we will donate up to 25% of every sale to fund more research. All you have to do is come in on Monday and order what you normally order – 25% of that is what we’ll be sending to PUCK personally.  If you’d like to know more, please watch the video below.

“I Refuse” to let this opportunity go by without thanking you for taking the time to read about EB, and for visiting our cafes during EB Awareness Week to learn even more. We also have some information on our Facebook sites (for both the Henderson café and our Las Vegas café…plus our “coming soon” site in North Las Vegas).

With Warm Tropical Wishes,

Michelle Shriver

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Posted on October 25, 2012, in Uncategorized and tagged , , , . Bookmark the permalink. Leave a comment.

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