I’m not sure where to begin this post.  I have known this family for about 7 years.  My husband used to work for Oxlee Sr. and we all became friends.  As life goes in the military community we have both moved to different states but are now close enough that I was able to take some family portraits of their amazing family.  We found this awesome park and I loved the lush greenery.  As some of you may know I am a photographer for the A Little Rae of Hope organization.  This organization provides free photography sessions to families with an individual who is dealing with a debilitating illness.  They are launching a campaign in September where they will be featuring one family every day of the month and asked if I would find a family to spotlight.  I instantly thought of Oxlee Jr. and his family.

Oxley jr. has been diagnosed with Epidermolysis Bullosa.  Here is part of his story from his mom “Oxlee Jr needed intensive bandaging from day 1. The slightest touch would literally cause his skin to rip off his body or to form blisters that would grow before our eyes. This was 14 years ago; diapers had the adhesive tabs that proved to be disastrous if they came in contact with his fragile skin. This was a new normal for us and we had no clue how or why it happened. Epidermolysis Bullosa (EB) is a genetic disorder, however as far back as our families could recall there were no cases of it….

EB affects more than just the skin. It affects internal tissues, growth, mobility, and physical development, among other things. Oxlee could never play sports or have rough physical contact with others. We could never lift him or carry him like other parents carry their babies. We had to be super careful in the clothing we chose for him as seams could damage his skin in minutes. Eating became difficult for Oxlee, as he would suffer blisters in his esophagus and his mouth, causing pain and strictures that prevented him from swallowing. To this date, he has had more than 20 esophageal dilations to help stretch his esophagus so he can eat.”

You would never know talking to Oxlee Jr that he isn’t just like every other kid.  He has his dads very sarcastic sense of humor and is a joy to be around.  I am so thankful that I was able to capture these moments for my friends and I hope to capture more in the future!

To find out more information on how you can help raise awareness and support the research of EB please go to http://www.ebkids.org