Yes, I mean Jonah, not Joshua. Who's Jonah? Jonah is an adorable little boy who has a first birthday coming up pretty soon. All first birthdays are special, but Jonah's party will be celebrated all over the country and beyond. Why? Great question. Jonah has a skin disorder called Epidermolysis Bullosa, EB for short, in which blisters develop easily all over the body. Children born with this condition are given pretty poor prospects with regard to longevity (87% of infants with Jonah's type die in the first year). "An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally" (http://www.debra.org). So, to say that Jonah can celebrate his first birthday is in many ways a miracle in itself.
Why am I even mentioning this?
Last year, while up in the middle of the night pumping for Joshua, I stumbled across this blog via another friend's blog (Thanks Autumn!). Immediately I became enthralled with the writing style of Patrice and Jonah's miraculous story. I found myself checking the blog for updates every day, sometimes more than once a day. Reading about Jonah's day to day gives me renewed faith and hope that things like prayer actually do work. There have been many times that Jonah has needed a complete 180 and for no known reason, except prayer, circumstances changed. Seriously, some things can't really be explained. Another reason I return to this blog time and again, education about EB. EB affects so many more children in this world than Jonah.
Because EB's reach is so far and wide Jonah's birthday celebration will also have an auction. An auction? Yes. Many people have donated wonderful items to be auctioned off to raise funds for research of EB. All proceeds from the auction will be donated to DebRA.
What can you do?
1. Check out the auction site, if only to bid other people up higher. Hey, it's all for a good cause.
2. Bid on and/or purchase some items.
3. Spread the word about the auction. Patrice (Jonah's mom) is a little concerned that no one will bid, thus no money for DebRA. Share the news far and wide, let's help fund some research on this disease!
4. Most importantly, find out more about EB. Educate your friends and neighbors so when you encounter a person with EB, they are treated with love, compassion, and understanding.
Recap:
Jonah's story: http://patriceandmattwilliams.blogspot.com
The auction: http://jonahsebauction.blogspot.com/
That's all folks!
P.S. In case you were wondering, here are the logistics for the auction. http://jonahsebauction.blogspot.com/2010/01/jonahs-eb-auction.html
3 comments:
Alison - Good news, bone marrow translants plus stem cell therapy seem to have a chance at curing EB:
http://www.startribune.com/lifestyle/health/19471139.html
Also looks like EB frequency is more like 20 newborns per 1 million:
http://dermatology.stanford.edu/gsdc/eb_clinic/eb-faqs.html#common
Jay
20 newborns per 1 million = 1 newborn per 50,000
Thanks for the extra info about stem cell treatments and bone marrow transplants. There is hope on the horizon for EB. Thanks Jay!
Whoops - How quickly basic math is obscured by perception!
Jay
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