Most of you know that my youngest grandson Jameson has a rare skin disease called Epidermolysis Bullosa (EB). EB is a pretty rare disease that affects about 1 in 40,000 births. There is no cure at this time. Research is pretty scarce and more is needed. We were told when Jamie was born that most Doctors and nurses will NEVER see a case of EB in their entire CAREER! So anytime there is a case it is up to the family to EDUCATE all of the caregivers. Imagine being told that when you have a newborn. It has been true. We have had to "teach" (if you will) each one of Jamie's caregivers as to the correct way to treat him.
We just found out a friend of a friend had a baby boy named Jonah who has EB. Jonah is having a rough time and him and his family need some extra prayers. Please take time to say a prayer for this precious boy.
For those of you interested to learn more about this devastating disease you can go to the www.debra.org website.
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About Me
- Marie
- I am retired for the second time in my life and have started a home business. Did I say retired? I design and sell scrapbooking papers. My passions are my family, my papers, scrapbooking, card making, traveling, reading (when I get the chance) and hanging out with friends.
2 comments:
I will put them in my prayers!
our best thoughts and prayers !
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