Monday, August 3, 2009

August Give a Blessing Recipient...Jonah!

Meet Jonah Alexander Williams!

Jonah is our Give a Blessing recipient for the month of August. Jonah has Junctional Epidermolysis Bullosa.

Jonah (with Mommy's help =) catches us all up on what exactly this is....
My skin is fragile like a butterfly. Only one in every two million babies born is like me with Junctional Epidermolysis Bullosa (JEB). We are called butterfly children, and you must touch us with great care. My big brother, Gabe, was stillborn in April of 2008. At the time, no one knew why he died, but now we know it was EB too. His skin was like mine. Friction and pressure damage our skin causing very painful blisters. Most of my body must be bandaged 24/7 to protect me from damage and to help damaged skin heal. It usually takes at least two hours nightly for my Mommy and Daddy to remove old bandages, bathe me, lance my new blisters, cover me with Aquaphor, and re-bandage me.I was born on February 27, 2009, and now I’m at home with my Mommy and Daddy after spending my first 32 days of life in the NICU. It takes more than four hands to take care of me and lots of bandages, Aquaphor, and other medical supplies. I can't wear most of the clothes my Mommy has for me because they will damage my skin. I can't handle tags, seams, elastic or anything that’s not extra soft. Even most diapers are a problem for me.Many babies who have JEB don't make it through their first year. I plan to be one of the exceptions. It will not be easy, and I will need lots of help. The painful blisters will never stop showing up and will take time to heal. I will also have hair, nail and major teeth issues as well as possible respiratory problems over time. Sometimes eating is a problem because blisters are also on the inside. Most people, including doctors and medical professionals, don't know about EB. For me, and others like me, to find a cure, this must change. My care is expensive and finding a cure is expensive. Solutions begin with awareness. I need your love and prayers as do other children and adults fighting to live with EB. We also need your support not only for our everyday needs, but for a cure.

Please join us in supporting this family! How??? Glad you asked!! =)

~Visit their website and let them know you are praying!
~SPREAD THE WORD!! -Grab Jonah's button and/or chipin widget and place it on
your site!!

Thank you so much for taking the time to learn more about little Jonah!

We pray that God uses this month to His glory!!


*There will be a BbB raffle or giveaway this month attached to this. Just haven't completely received clear direction on what that will be yet.... Rest assured however that you will be blessed to give! So again this month, for every dollar donated to little Jonah will equal one chance towards winning the goods!! Simply forward us your pmt confirmation to receive your numbers and we will pick the winner Sept. 1, 2009.

I'll let you know when we decide what those "goods" will be!! =) Thanks everyone!!

1 comment:

Les said...

I have been following that little buy for a while... just chipped in- thanks for the heads up!