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.
21 Comments
The picture of him with the tears on his cheek seriously breaks my heart
I don’t know what is worse…the pictures of the blisters or the picture of him with the tears. Poor baby. Great job capturing what they go through every night. My heart is touched.
These pictures are so tender and moving. One of our friends has a child with this condition. Thank you for bringing awareness to it.
Your pictures are incredible. I am the mom to an amazing boy who also has rdeb. Thanks for letting others see just exactly what our kids deal with.
This is soooo touching…. and soooo true. I am the mother of a 15 year old son with the same type of EB and after having a difficult bandage change ourselves this morning, I am deeply touched by how you managed to capture the emotions around this. Thank you so much for sharing this on your weblog and for the awareness this will bring to the world. Sincerely - Liesbeth, mom to 15 year old Dennis from the Netherlands.
the tears brake my heart, seeing the smile on his face knowing he loved.
I too am the mom to a sweet lil girl who also has EB. Its hard doing all the bandage changes but its become a part of our daily life. Its not something thats fun at all. I think the pictures are beautiful!!! It also brought tears to my eyes as we see similar each and every day. Bless lil Michael….what a lil sweetie!!
My son, Phoenix, has EB and I, too, know those pleading and crying eyes. Michael seems to have it much worse than Phoenix and my heart goes out to you both. The pictures are beautiful and thank you so much for sharing. Sometimes it feels like you are so alone in the battle; seeing these makes me realize that we are not.
I’m 52 and also have EB…Junctional EB. Even though I know first hand the horrors and constant pain EB entails, it broke my heart to see this little guy go through his bandage change. Your photos and video will be amazing for EB Awareness. Heather & Michael are courageous in sharing this very personal part of their lives with the world. Thank you.
I’m 20 and have RDEB, I know how horrible every bandage change can be. I was in tears seeing this beautiful little guy go through that. I can only pray, and hope that cure comes fast. I dont think it could come fast enough for me. I hope Michael gets better. -Dona
Wow–this breaks my heart. I’m sure that was hard to watch. Just seeing the pictures makes me cry! Poor little guy. I hope they find a cure soon!! God bless all of you dealing with this awful disease!
These are beautiful, touching, and heartbreaking pictures, Shannon. Thank you for sharing them!
That breaks my heart that he has to go through that. Bless his little heart, and his parents too.
awww
those pictures are heartbreaking. You captured something so difficult, so very well, I love the photojournalistic feel these have.
Those tears and sad face just break my heart. Poor little guy, and poor mama too, I can’t even imagine how painful this must be for both of them. Love the last one with him smiling through the tears, so so sweet. Sending lots of prayers and good thoughts their way!
These pictures are so true what our children go thru on a daily basis with EB. Great job showing others just what EB is all about.
Oh, poor kid. The first two photos are heartbreaking.
Oh Shannon, I was such a mess watching that slide show. You captured so much with your pictures. My heart goes out to this family and all that they deal with.
That slide show is incredible. How does she do it EVERY night. All the moms dealing with this I am in awe of you!
Ohhhhhhhhhh Shannon, I just started bawling. This breaks my heart..you really captured the emotion.
I pray they find a cure for Michael. Thank you for sharing.
erin
Hi Shannon,
I’d really like to follow up on these pictures with you. I work for DEBRA Ireland and we were extremely moved by them. If you’d in interested in discussing further, maybe you could email me on anna@debraireland.org
Kind regards,
Anna
Shannon,
Thank you for posting about this to raise awareness. My heart and prayers go out to this brave and adorable little boy and his family.
Krista