Once upon a time, I stumbled upon a blog about a little boy named Jonah. Jonah has EB. You can read about Jonah at his mom's blog http://patriceandmattwilliams.blogspot.com/. Believe me, once you do, you will adore this sweet little boy and admire his mom's strength and honesty, as I do. Oh, and that Jonah? Well, his smile is as bright as the sun.
Another little boy with EB, named Tripp, has also captured my heart. Right now, at the sweet age of two, it appears Tripp may be ending his journey here on earth. You can read about Tripp on his mom's blog http://randycourtneytripproth.blogspot.com/2011/07/i-think-hes-known-it-all-along.html?spref=fb. As you read Courtney's words, you can feel her heart is breaking about losing her son yet, she is ready for him to be in Heaven and pain-free. I can't begin to imagine the conflict her heart must feel every day.
Be aware if you choose to read the blogs, you may see some pictures that will bother you. EB is an ugly disease. There is no way to make it pretty. But I hope you can see past the wounds and look into their eyes and see what I see.
Just a couple of cute kids. Who shine from the inside out.
Holy smokes. I can barely keep my eyes open today because i spent 2.5 hrs reading Tripp's story after reading your post in bed last night. My arms fell asleep from holding my phone up, I dropped it twice on my face and the battery died once. But I couldn't stop reading... 3am or not. What an absolutely heartbreaking situation. My thoughts are definitely w/Courtney & her family at this time of trying to make him comfortable for his last time here on earth.
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