If you’ve been following the blog for a while, you may remember seeing Michael before. Michael has a genetic condition called Epidermolysis Bullosa. It’s a condition where his body doesn’t produce collagen 7, and therefore lacks the strength and elasticity of normal skin. His skin is extremely fragile, and the simplest contacts can cause blistering and tears.
He has to wear bandages on his hands and feet, not just for protection, but also to prevent the skin from scarring together and causing his fingers and toes to become lost in the scars. She has to check his skin for blisters and pop them, otherwise fluid builds up and the blisters just keep growing and damaging his skin. And infection is always a risk, with all of these open sores.
The bandaging has improved the condition of hands and feet amazingly, but it is a lot of work. Michael’s mom, Heather, asked me to take pictures of their nightly bandage change so they could use the images to teach other people more about this condition. It was rough… Michael wasn’t happy. Heather said that while not all days were bad, this was a typical bad day.
I haven’t figured out how to embed the video straight into the blog like I have before, so there’s a link: A Nightly Bandage Change
Here are some of the images from the slideshow….
The pleading look in his eyes just breaks my heart.
The tears…
A sweet moment…
And it wasn’t all bad! He was so happy when it was done and got some play time with mom…
There is some promising research going on, things that may really improve or possibly even cure this condition. Wouldn’t that be awesome? Heather said she would be happy to have me put this session here, because awareness is what they need… they need people to care, they need people to help, they need research and they need a cure.
by shannon
21 comments