I am not sure how I first discovered the Williams Family Blog. I am not exactly a 'blogger', but I do follow a few blogs written by friends and occasionally check out some of the blogs they read. I imagine that is how I first 'met' Patrice, Matt and Jonah, and remain captivated by Jonah almost 2 years later. If I recall, Jonah was only a few months old when I started reading and this is likely one of the first pictures I saw:
Jonah has an extremely rare congenital disorder that affects his skin ... you know, the largest organ in the human body! Our skin is an amazing organ designed to protect us from disease, prevent dehydration, insulate and regulate body temperature, as well as register sensation. Skin is intended to be strong, supple, durable, flexible ... most importantly, our skin is supposed to protect us from harm! This tough little guy was born with Epidermolysis bullosa making his skin delicate, unreliable, and as fragile as a butterfly's wing. The slightest brush, bump, chaff, or fall causes his skin to blister. While his skin may not be, he is one resilient little guy … so are his parents!
Last year, in honor of his first birthday, Jonah's auction raised close to $9,000 for DebRA the Dystrophic Epidermolysis Bullosa Research Association of America.
Jonah's family, and the amazing way DebRA is helping families like his navigate life with this condition.
This year, in honor of his second birthday, we hope to knock the socks off of last years total!
Jonha's EB Auction and check in regularly to bid on some really great items and help raise money for a wonderful cause! If you're on facebook you can also become a fan of Jonah's facebook EB Auction page. Jonah's auction will run February 23rd through February 27th, 2011. If you would like to donate items to be auctioned, please contact Katie (event organizer) at firstname.lastname@example.org
I donated the following necklaces last year and plan on donating several again this year!
Mark it on your calendars, Jonah's Auction starts in SIX WEEKS!!!