Sweet little Ellie is almost 4 years old and is just about THE CUTEST little thing ever! Ellie suffers from Recessive Dystropic Epidermolysis Bullosa, which is classified as one of the worst forms of one of the worst diseases. I highly encourage you to do some research on this disease - read about it, learn about it and pray for those that have it.
This is the easiest and best basic definition of EB (taken straight from www.debra.org) - Epidermolysis bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. This condition is not contagious.
An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally.
That is the "generic" definition. What this really amounts to is that sufferers of EB live every day with extreme pain which can be compared to second and third degree burns. Most EB patients die before they make it to their 20s. This is a very serious and usually fatal disease. The main issue with this disease is that there is NO treatment and there is NO cure. Efforts are being made and clinical trials are underway - but currently these are not available for every sufferer.
I am extremely passionate about raising awareness and doing anything that I can to help promote funding for a cure. Why you ask - because, like Ellie, I have Recessive Dystrophic EB. You would not know it to meet me and most people that learn this are suprised by it. After 35 (almost 36) years, I have become a master of disguise and realized that "this" doesn't matter. I will not let it run my life. I am also very aware of the fact that I am an exception to the rule, I am truly blessed to still be alive.
I have a rare talent that I will gladly use to help those helping this cause. I was very honored to be a part of Butterfly Wishes for Ellie - and although it was just a cake, it meant to world to me to be able to do that for her. (Seriously people - CUTEST little girl EVER!!!)
I used the invitation as inspiration for the cake. I am thrilled with the way it turned out! Everything is edible and by the end of the night there wasn't much left!
Thank you so much Shawn and Andrew for letting me be a part of this event!