Several years ago a watched a story on TLC about a young boy with EB. I was blown away by his struggles, and the skin disorder has always been on my mind since. One day I heard of a mommy needing our prayers. She had lost a son who was stillborn, and then she was having another son, but he was born with severe skin loss. They found out he had EB, and that EB was probably what had caused her first to pass away. I've been reading their story, and their page helped me find other pages for kids with EB.
Every time I change Mailey's diaper, hug her, give her a bath, clean off a scrape when she falls...I think of these kids. Any friction at all on their skin causes it to blister and slough off. They must remain wrapped from their necks down, most have a g-tube, and they fight infections along with multiple complications their entire lives. Kids, just like ours, trying to be kids in such a situation is so hard.
I would love for you to read about some of them.
Tripp's mom is posting all week with some answers to questions about EB. She explains it in a great way.
Jonah's mom sent a letter to their entire neighborhood, introducing them to Jonah and teaching them about EB.
Just thought I would at least try and raise some awareness for those of us who don't know anything about this skin condition. But be ready...some of these kids will steal your heart. They are amazingly strong, and their mommas are superheroes.
1 comment:
Melissa- Love your background and love this blog! I haven't even gone to the EB pages yet to read more and I'm in tears. Thanks for sharing :)
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