For about a year now, I've been following a blog from the Williams family in North Carolina. I don't know them personally, though after reading along for so long, I kind of feel as if I do.
Matt and Patrice's first son Gabe was stillborn just a few weeks before his due date. Their second son, Jonah, will be turning a year old soon.
Sweet Jonah has a medical condition called Epidermolysis Bullosa (EB), which was also likely the cause of the Gabe's death.
As a nurse I can say that there are very few conditions out there as cruel as this one. Jonah's skin and mucous membranes are so fragile that a mere touch will cause his skin to blister and slough off. The disease is often fatal, and the daily implications are far reaching.
I'm so guilty of taking for granted the health of my children, and Matt and Patrice are so inspirational in the selfless way they care for their baby boy.
Later this month, there will be an auction going on at this site to raise money for EB research, and hopefully find a cure for this terrible disease.
Consider stopping by and bidding on some of the great items that have been donated!
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2 comments:
I will keep little Jonah in my prayers.
Amazing at how strong their faith is with what they have endured. So positive to see that.
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