A few years ago, I stumbled upon a blog that really touched my heart. It was about a little boy in North Carolina named Jonah, and his life with the disease Epidermolysis Bullosa. People with EB lack a protein that binds their skin together and as a result, they deal with terrible blisters all over their body - both externally and internally. I read about Jonah and his strength for the last three years, and have prayed for him and his parents. If you get a moment, click the link above and read his story - his family is amazing and I truly admire their faith in the Lord. At any rate, as a result of reading this blog, I started reading other blogs about sweet children with EB, including Tripp. In January, after struggling with EB for 2 years and 8 months, Tripp went to be with the Lord. His mother also inspires me with her incredible strength and faith.
The stories of these kids weighed on me, and I knew I wanted to donate to the cause of supporting EB research in some way. Jonathan had asked me what I wanted for my birthday, and I remembered seeing a necklace that, upon purchase, 100% of the proceeds would go towards EB research. I had mentioned it months ago and didn't think much about it again. Then, as Jonah's third birthday drew closer, I began to read about his EB auction to raise money for DebRA (EB support and research). I checked out the website and there was the necklace up for bid!! I sent Jonathan the link and he won it in the auction for me! This was cool for a few reasons - because the necklace was purchased and donated to the auction, the proceeds from the original sale had ALREADY gone to benefit EB research... because Jonathan bid on it, even MORE money was going to DebRA! It was a win-win for all involved!! Jonathan actually ended up bidding more for it than if he had simply purchased it on his own, but since it is for such a great cause, he didn't mind - yet another thing I love about my hubby - his big heart!!
So that's the story behind my birthday necklace. Why the butterfly? Because the skin of children with EB is so fragile, it is often compared to butterfly wings... and kids with EB are sometimes referred to as "butterfly children"
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