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, February 28, 2010

How to Use the Pinterest View


Here's a quick run through of how to navigate the category listings via Pinterest.

After you click on any of the category listings from the auction site, it will take you to a page that looks like this:





To view an item more closely, simply click on it and it will bring up a larger image.






If you want to know more information about that item or make a bid, click that larger image and it will bring you to the listing for that item.






If you want to close the larger image so you can move on to see other items, just press  the "Esc" button or click to the left or right of the pop-up box (see picture below).



That's it!  If you have any questions, don't hesitate to email me at jonahsebacution@gmail.com.

Wednesday, February 17, 2010

Who We're Doing This For: Part 2

This is Sam. Here is an excerpt from her Caringbridge site:
Samantha was born with a genetic condition called Epidermolysis Bullosa. She has a Dominate Recessive subtype. RDEB is usually lethal before the age of 20. Sam has endured a life of pain that goes beyond words for all of her 14 years of life. Just when we had no hope at all for relief or a chance at anything close to a normal pain free life, along came "The Bone Marrow Stem Cell Transplant". We followed this treatment for 2 years. We absorbed any information we could get. first consulted in New York with Dr. Mitchel Cairo. Then we consulted Dr. Michael Nieder at All Children's Hospital in St.Petersburg Florida, where we live. We consulted with Dr.Nieder to help educate our family on transplant, and to also give us his professional evaluation on Samantha. We asked him directly to tell us if he thought she would be a good candidate. Samantha's 8 year old sister Chloe is a "10 out of 10" silbling donor match. This is HUGE for this study. We considered this to be our first sign from God that this was a "go".Then we went to Minnesota with Dr. John Wagner, which is where decided we would transplant. Samantha is going to be patient #7. Lucky 7!

Since that was written, Sam has undergone her transplant. She's currently at Day +173. You can visit her site here to read more about her long and arduous journey. Oh, and while you're there, you may want to know... it is quite possible that she may have had a birthday this week. ;)

Monday, February 15, 2010

Who We're Doing this For

If you are here, chances are pretty good that you know Jonah's story. Maybe you have just recently discovered this awesome little boy or maybe you have followed his journey from the day he was born. Either way, you're here because his story (or one like his) has touched you. If you've been following Patrice's blog for awhile, you may know the stories of Leah, Tripp, Sam and others. Or, maybe you never clicked the links and read their stories. Either way, even though many of you are here because of Jonah, there are many, many more individuals that share his story, his struggles, and the struggles of his family. Despite the fact that the auction bears Jonah's name, we are doing this for all of those that are fighting EB and in honor of those that have lost that fight. EB is a crappy (and that is purely an edit for political correctness... it's worse than crappy) condition that no one deserves.

Today, I'd like you to meet Caroline. She's just one of the little fighters that we are doing this for. Here is her story as shared by her parents.

Caroline was born on August 22, 2005, following sister, Elizabeth (then 4), and brother, Patrick (then 2). The neonatologist attending her c-section delivery immediately identified that Caroline was suffering from a skin disorder – her left leg was completely denuded from the knee down and she had other areas of missing skin, including where the umbilical cord had been wrapped around her neck several times. Within a few hours of her birth, Caroline was preliminarily diagnosed with EB by a pediatric dermatologist and transported to Children Memorial Hospital’s Pediatric ICU via ambulance.

She was to remain in the PICU for 133 days. During that time, biopsies led to a diagnosis of Junctional non-Herlitz EB – a sub-type with a relatively good long-term prognosis. She received Apligrafts (skin product grafts) on her legs, which were highly successful in serving as biologic dressings and promoting the growth of her own skin in the denuded areas. She was unable to eat orally and underwent g-tube surgery at 5 weeks. She suffered numerous infections. She endured 14 different PIC lines for IV nutrition and meds – each time the skin giving way where the line was inserted. When her increasing respiratory distress was eventually linked to GERD (reflux), her G-tube was converted to a G-J, moving food to the small intestines rather than the stomach. Fortunately, her esophagus was able to heal enough to avoid a tracheotomy. She could not tolerate wearing diapers or clothes, instead swaddled loosely in soft blankets.

I would visit 3 days during the week (my typical work schedule) when we had child care for Elizabeth and Patrick, navigating a 1 ½ hour commute each way. On weekends, Pete and I would visit together as much as possible; but each visit together required finding child care for our other two children, who were not allowed on the PICU and did not fully understand the situation. Caroline remained in the hospital from the dog days of summer, through fall, Halloween, Thanksgiving, Christmas and New Year’s. The holidays were especially painful as we made the difficult decision to spend them with our families rather than at the hospital – attempting to maintain some normalcy for Elizabeth and Patrick. Finally, on January 4, 2006, Caroline came home - along with liquid oxygen tanks, suction and nebulizer equipment, 24/7 feeding pump and 14 different medications! She had severe developmental delays due to limited movement from her hospital bed and began physical, occupational, developmental, and speech therapies.

It’s now 4 years later…


...and Caroline is a smart, tough, amazing little girl. With piercing blue eyes and a spirit pure and sweet, she has inspired the kindness of family, friends, and strangers, and touches all who meet her. She has accomplished many things we weren’t sure would ever be possible: she attends preschool, she rides a tricycle, she eats taco chips… She endures her physical challenges with courage and is quick to give hugs. Elizabeth and Patrick occasionally express frustration with EB, the care it requires, and the limitations it imposes on our family. They are gentle with and protective of Caroline, showing her love and companionship and teaching her in many ways.

We thank God for the blessing of each of our children. We pray for strength, patience, and a cure for EB.

Adrienne & Pete Provost, Palatine, IL

Friday, February 5, 2010

Bidding Tutorial

There have been lots of questions about bidding and how it will work, so I thought I'd walk you through the process. :)

Bidding is incredibly simple.  You don't have to sign up for anything or do anything special--just enter your email so we can contact you if you win.  Once you find an item you want to bid on, open the listing if you haven't already (by clicking on the post title), and scroll down until you see the comment box. Click in the white box that says "Leave a Message" and type in your bid.


Once you've clicked to leave a bid, the commenting form will expand out and give you some sign in options, including Facebook, Twitter, etc. DO NOT USE THESE!!! I have had MANY problems in the past contacting winners who have logged in using their Facebook and Twitter accounts. Please use the box to the right to pick a name (this will be displayed for others to see).  You can go with first name, first and last, screenname... it doesn't really matter.  Katie, Amelia Pond, Soft Kitty, etc. are all perfectly acceptable.




Once you click to type in your name, the form will expand again and give you the option to type in your email. THIS MUST BE A VALID EMAIL SO WE CAN CONTACT YOU IF YOU WIN!!! 



After all you've typed your bid, name, and email, click "post" and you've made your bid. That's it! You have the option of registering with Disqus by checking the little box, but you do not have to.  Registering just saves you from having to enter your information each time you post.

IMPORTANT NOTE: It appears that a few browsers are being a bit wonky when it comes to displaying comments (specifically Chrome and IE).  If you post and your bid or comment and then refresh or come back and your post has disappeared, please check the post in a different browser (Safari and Firefox have been dependable) before you panic and repost.  

Writing it out like that made it seem so much more complicated than it really is. I just wanted to be thorough so everyone knows how to bid. In fact, feel free to make a comment here just to practice using the system. You can just put a "$" in the post so we know that you are just testing the system. If you have a question, you can also post that below. Just a suggestion--you may want to turn of comment subscription if you do practice on this one. I doubt you want notifications every time someone practices. :)
________________________________________________

Just so you know, your email address WILL NOT be visible for others and we will not use it unless we need to contact you about an item. :)

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 jonahsebacutionATgmailDOT.com. 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)