Well, if you have little kids or are a Grandparent you can answer that one. In the word of Bob the Builder..... YES, we can! I saw awesome and fabulous things come of a Mom and Dad with a very special little girl named Gwendolyn. They had a dream of treatment and ultimately a cure for the cruel disease SMA. This grass roots foundation won the #6 spot in the Chase Community Give and was awarded 100,00.00 to help fund research. How did they do it you ask???............. with a lot of help from people who were friends and some who just read their story and wanted to help.
Well, it's time again, you can help, you can be part of something bigger than yourself. There is this family you see, a family of 4 but here on Earth they are just 3. Their life is a story one they didn't choose. They are dealing with a disease and do it with such grace. Always remembering that God is in control and they know he loves them more than they can imagine. They are Matt and Patrice Williams and they know that little Jonah is here to make a difference. Rarely in pictures do you not see a smile on their face. The pain in their words is sometimes evident, but they praise God for each day they have with their little son Jonah. Their life day to day is lived with EB, and little Jonah is their miracle. Their sweet baby boy with beautiful blue eyes lives his life in pain, pain from friction on his skin of any kind. This sweet boy blisters with a bump or scratch. They spend their days wrapping and lancing.... watching Jonah be in pain from the skin patches that fall from him. They also live each day longing to have time with little Gabe who went to heaven before he ever got to come home. You can read more about them at http://patriceandmattwilliams.blogspot.com/. Just be prepared to be inspired and changed, not to mention smittin with little Jonah.
As bad as that is they are not the only family to live with EB. Many families live with EB and the scars it leaves behind. Too many babies.... too many losses........ too much pain. Epidermolysis Bullosa is a rare genetic disorder that effects the the way skin holds together. Bumps, friction, pressure causes his skin to blister and slough off. The possiblity of nail, teeth, infection and respiratory issues are also very real. Sadly, many babies don't live to see their first birthday.
For Jonah's Big Blowout First Birthday his sweet Mom Patrice wanted more than the usual smash cake birthday. She wanted to make a difference, so she and some friends came up with a wonderful idea. Jonah's EB auction...... all proceeds to go to DebRA for EB research. Cool idea huh?!? So the week before Jonah's birthday will be fun and exciting. So how can you help you ask?? Just remember the 4 P's........
1. Post your own information about the auction to your blog. Post to your Twitter, and Facebook too. Gosh, get on the old fashioned phone!! Let's get LOTS of shoppers!!!!
2. Peruse the cool line up as soon as they post it.
3. Pray, never ever forget the power of prayer. Especially when you get a bunch of Moms and Dads praying for children....
4. Purhase!!! Bid for those special, unique items, bid bid bid. Know that your bids are going to help fund research through DebRA.
When??........ February 22nd to the big finale on Jonah's birthday February 27th. Do the right thing....... SHOP!!!
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