our prayrs for william i was born in 1968 i have 9 children 6of9 have epidermolysis bullosa simplex effecting mostly the jointed areas nees elbows fingers toes spine and people dont know how painful it is unless thay have it! ive traced it back 4 generations i know how costly it is ive probbly spent 500,000 on bandages alone so keep your head up and be strong for him
best wishes ronald stuart
Wow how do you do it? How come insurance doesn’t pay for it? Where do you live? Thank you for the kind words.
Our prayers are also with William and your family. My husband and 3 stepchildren also have EB so we know part of what you are all going through. We are from the UK so cost isn’t really an issue,especially for the children as medicines,dressings etc are covered by the NHS,it must be hard having that additional worry.
Best wishes
Tracey
I am so excited to find your blog. I became aware of EB a couple of years ago, and the children and families just really grabbed my heart. I’ve tried to stay connected through irefuseeb.org and also the Butterly Fund, so I don’t know how I missed your Birdies for Butterflies event, but I’m glad I found you now 🙂
My husband and I own several cafes south of Denver, and at the opening of the second one we made a donation to the EB Clinic at the children’s hospital. Giving back to the local community, and especially causes near and dear to our heart is important to us in business and in life. If you have a mailing list, I’d love to get on it — and support your next annual event. If there are other opportunities along the way, let us know as well. Thanks, and best wishes and prayers and (((((hugs))))) for Bill and your family. The strength, hope and courage of Butterfly children and their families is so inspiring…may you always feel encouraged by those of us who keep you in our prayers and hearts.
BIRDIES FOR BUTTERFLIES 
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