Thank you for another great year. Jonah's EB Auction 2013 has ended. Winners will receive an email within the next 48 hours with instructions for how to make payment.

Sunday, January 3, 2010

Legal Jargon

Yeah, we have to do it, so here it is.

Terms & Conditions

1) All items are donations given kindly by individuals and/or businesses. Unless otherwise noted, businesses are not affiliated with gift cards and other items inlcuded in the auction and are in no way responsible for the items in the auction.

2) At the close of the auction, all bids for custom items become the responsiblity of the winning bidder and the individual or business that donated the item. After payment is confirmed for the item, neither Jonah's EB Auction, nor its organizers are liable for the item, including, but not limited to):
a) Failure to redeem gift card or service
b) Dissatisfaction with the product
c) Not receiving product, not receiving product in said time frame, receiving broken or
damaged items.
If you have a greivance about an item, please contact While we are not responsible for the item(s) we will contact the party that donated the item and try to help resolve issues.

3) You agree to pay the full price of your winning bid within 48 hours of the close of the auction. If your payment is not made within that time, the item will be awarded to the next highest bidder. Any payment made by the original winner after that point will be considered a donation to DebRA and no item will be rewarded to that person.

4) Payments will be done as direct donations to DebRA and as such are non-refundable. Please note that ALL SALES ARE FINAL.

5) Jonah's EB Auction, its organizers, and contributors are in no way liable for the actions of any other individuals on the site and retain the right to delete any comment or bid that is not made in accordance with the guidleines set forth on this site.

6) Organizers of the auction are allowed to bid on and win items. They do not, however, receive any discounts, preference, or additional consideration and as such can only win auctions in which they are they highest bidder.

7) All bids are public, but email and contact information are not. We will not use your email address to contact you in any way that is unrelated to this auction. By bidding on an item, you are granting your permission for us to contact you with additional information about the item (should it become available), information on what to do if you are the auction winner, and any reminders related to this auction (such as payment information or shipping confirmation).

8) By bidding on an item, you are acknowledging that you agree to all of our terms and conditions.

Sorry to load you down with the legal stuff, but in this day and age, you can never be too careful. This auction is for charity and we want every dime possible to help find a cure for EB. Thank you so much for participating!!

How to submit items

Have an item you'd like to submit for the auction? Contact us at jonahsebauctionATgmailDOT com.

About Jonah

Patrice Williams with her son Jonah in the Hospital

From Patrice:  

Like many of you, my husband, Matt, and I had never heard of Epidermolysis Bullosa (EB). That is, not until February 27, 2009 when our son, Jonah, was born. Jonah was born missing the skin on his elbows, hands, and from his knees down. He was dotted with blisters and lesions all over his body, but his limbs were the worst, by far. We were terrified. None of the doctors knew what was wrong. He was whisked away to our local children’s hospital, where it was determined within 24 hours that he had EB. WE did not hold him and barely even touched him for nine days. When we did get to “hold” him, we held a pillow that he was lying on. Our contact with him was minimal in those first weeks. He was in such terrible shape.

Learning that Jonah would have to suffer through something as horrible as EB was the second blow we had endured within a year. In April of 2008, we had lost our first son, Gabriel, full-term. He was stillborn, and although his skin was pulled back on his hands and feet, we were told that this could sometimes happen when babies die in utero. After an autopsy and general genetic testing, we were told that there was no apparent reason for his death. With Jonah’s birth, our questions about losing Gabe were answered. Unfortunately, the answer was Epidermolysis Bullosa. Not an easy pill to swallow.

The doctors were predicting the worst for Jonah, solely based on the percentage of skin that was missing and how deep his wounds were. They told us we would be in the NICU for a minimum of two months, but I think many thought he would never come home. A few weeks later, we learned that he had the Junctional subtype. We were told that he could not be categorized as Herlitz or non-Herlitz, we would just have to wait and see. Wait and see? Wait and see?! There were moments I felt like I was waiting for him to die. Every new milestone was bittersweet. “Hang on to this memory, Patrice. You may not get to see this again.” Or “Enjoy this vacation, Patrice. He may not be here next year.” It’s a terrifying way to live.

The Williams Family

But I remember a few comments I received on my blog from the EB Community that gave me hope, even in those first days. I got comments from Janel, who has RDEB, is in her thirties, married, with a daughter of her own. She said something like, “EB is not the death sentence the doctors make it out to be” and other encouraging words. There were comments from Adrienne, mother of Caroline, who has Junctional, and is infection free and thriving at age four. There was Zack, a five-year-old, with RDEB, who was playing soccer and t-ball and telling people he got in a fight with a T-Rex. Story after story after story of people LIVING with EB. And we found Debra and Geri (or they found us, rather) and sweet Bill at National Rehab, and all of a sudden, it felt like we could do this. We could LIVE with this.

And THAT is what we will instill in Jonah, no matter how how long or short his time here on Earth may be. He is not dying. He is not JUST surviving. He is not sitting around waiting to get an infection. Jonah will be LIVING. If anything, the reality of Epidermolysis Bullosa has given us a new perspective on life. As cliché as it sounds, none of us know how long we have here, and we are determined that our family will LIVE. We’ve already missed out on an earthly lifetime with our sweet Gabe. There is NO WAY that we are going to miss out on Jonah’s time by worrying about the “what if’s.”

Don’t get me wrong. There are days that are completely overwhelming and days where we (well, I, at least) totally lose perspective. The risk of infection, the bandage changes, the tube feedings, the therapies, the doctors’ appointments. Sometimes it feels like too much. But then, Jonah giggles or learns something new or snuggles up against me, and it takes my breath away. And in those moments (which FAR outnumber the tough times), I know, beyond a shadow of a doubt, that Jonah is more than anything I could have asked for. He has taught me so much in his short 16 months here on Earth. He is strong, resilient, hilarious, AMAZING. Jonah is my hero, and I wouldn’t trade him for all of the “healthy” kids in all the world.
Jonah Williams

Patrice Williams, mom to Jonah, JEB-nH (we think)
Winston-Salem, NC

(Taken from DebRA's family page)

Contact Information

If you have any questions about the auction, rules, your bid, etc., please email the auction administrators at jonahsebauctionATgmailDOTcom.

If it is about an item, please CLEARLY indicate the item. (Example: Target Gift Card - No. 4)