Epidermolysis Bullosa Awareness And EBhelp.org

Easton FriedelWhen I started this blog, I had intentions of highlighting a new charity each month. Not only was it difficult to choose a new one each month and get it up on time, but ever since little Easton Friedel was born in August 2012, I haven’t been able to think about much in the realm of charity other than helping to find a cure for Epidermolysis Bullosa.

Epidermolysis Bullosa, or EB, is a devastating genetic disorder of the skin that affects 1 in 20,000 babies born in the US each year. While EB is dubbed a “genetic disorder”, it is not necessarily hereditary. There can be no family history of EB, but a child can be born with it due to a spontaneous genetic mutation. For a child with EB, their skin is as fragile as butterfly wings, which is how they got the nickname “butterfly children”. Any sort of friction, even a parents’ soft touch, can cause the skin to blister, tear, or even fall off. Many babies born with this awful disease are born missing the skin from one or more limbs. Right now there is NO CURE…only wound treatment.

My husband and I were utterly heartbroken to find out about so many precious children with EB, and the suffering they endure every day. Every. Single. Day. We have become friends with many of the families and wanted to do something to help. We created the website EBhelp.org to help EB families raise money that they need (often desperately) for medical bills and wound-care supplies.

Often times the children require 24-hour care, so one parent must stay home with them, forcing the family to live on one income. Because of this, they sometimes are forced to get state medical coverage which, depending on the state, doesn’t always cover all of the bandages required for wound care and infection prevention. These bandages and the accompanying supplies can cost over $10,000 PER MONTH. We set up a Donation link for each EB Fighter so that individuals can easily donate funds to them via PayPal or Debit/Credit Card. We also list their mailing address so people can send gifts or cards of encouragement to the Fighter and their family.

Please check out EBhelp.org and help out an EB Fighter if you can! They need it!

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