William Vinson was born on March 16th 2010. He was initially a very healthy little boy. Within a few short hours, William developed signs of a very serious complication with his skin. Shortly thereafter, he was diagnosed with Epidermolysis Bullosa (EB) a chronic, painful, genetic skin disorder with no known cure.
This blog was created by Anim’s (William’s Mother) sister, Larina McClain. I do this to create awareness and have a place to post updates for our Bi-Annual charity golf tournament that we began hosting back in 2014 in Colorado to raise money for kids who suffer from this debilitating condition.
WHAT IS EB?……..Imagine life were every moment is constant pain. EB children are referred to as Butterfly children because their skin is as delicate as a butterfly’s wings. Imagine life as a mother, wanting to comfort your child in pain but you cannot, because the slightest friction will cause your childs skin to blister and tear. EB children must keep their entire bodies wrapped in bandages to protect their skin. Bandages must be changed every other day and can take three adults up to four hours to complete.
WILLIAM?…….. He is an Angel. He smiles all the time in spite of the pain. He has already brought joy into so many peoples lives. In spite of his mouth being blistered inside, he eats, laughs and even walks. He loves interaction and any kid of learning experience, art, science, nature, horseback riding, and most of all music!
Since this journey began, I’ve had the pleasure of meeting one of the most respected people in the EB community. Her name is Laurie Sterner. She does not have a child or relative with EB. She has just chosen to dedicate much of her life and time to actively supporting families in need that have a child with EB. To read her story please visit her website at: www.thebutterflyfund.org She has set up the Butterfly Fund that we are raising money for in our 4th Bi-Annual “Birdies for Butterflies” Golf Tournament. 100% of the Funds donated there will go directly to help many EB families in need.
To learn about the Butterfly Fund please click here:
To learn more about this incredible event Birdies for Butterflies on September 21st 2020, visit the tab at the top or click here to get all the details.
Thank you so very much for your thoughts, prayers and donations. They are greatly appreciated, more then you know.
For more information on this disorder here are some web links:
www.youtube.com/watch?v=M7qirJXWhzc -Not for the faint or heart
To see more short videos that I took of William while visiting him in the hospital click this link.
Kisses to William!!!
To read the latest posts or to follow the blog on William aka “Bill”, click on the Blog Archive Tab above.