Why oh WHY do you go during the summer? Don't you know it is HOT? Don't you know it is CROWDED?
YES, I know it is hot. YES, I would love to NOT go during the summer. Yes, I know it is crowded.
However, our family travels to Orlando every other year for a very special reason.
The Phelan-McDermid Syndrome Foundation BiAnnual Conference.
You may already know that my husband and I have a very special child named Jacob. He was born with a very rare genetic disorder called Phelan-McDermid Syndrome. When he was diagnosed at age 18 months, the disorder was yet to be named so it was called 22q13 deletion syndrome. At the time, there were only about 150 known cases in the WORLD. Since then, genetic testing has improved so much that now, there are about 800 cases WORLD WIDE. About that time, the foundation was in its infancy and we had yet to meet another child with the same disorder. So, we attended the first conference. It was a wonderful and emotional experience and we learned so much about Jacob's future and how to best care for him.
Since then, we have attended each conference which were always held in Greenville, NC. 2 years ago, they moved the conference to Orlando allowing families to add a family vacation at Disney to their travel plans. This was the first time we took our other two boys with us and took a family trip to Disney before and after the conference.
The foundation lives on volunteers. We have volunteered in several ways in the past, but something was just on my heart. I needed to use MY gifts to help the families. So, our family portrait donation day was born. Trey and I, along with an amazing photographer friend, set up two photographic studios at the conference, and photographed any family that signed up for NO FEE at all.
These families rarely have family portraits. Some of them have never had one. A variety of reasons goes into this. Some have such high medical expenses that there is no extra money left over for things like family photos. Some are scared of what their special child will do when at the session, or maybe even embarrassed by their behavior. Whatever the reason, we wanted to give them no reason NOT to do this. So, my friend Bill and I photographed families for 5 straight hours. Trey edited images and burned dvd's and after 10 long hours of work, we had it done!
So, this will be year TWO of these family portraits for a cause. We hope to streamline it a little more and gather a few more volunteers to make it go a little faster. We are dedicated to getting these families some beautiful, high quality images of their amazing children.
Before and after the conference, I have opened up a few appointments for my clients at DisneyWorld. We begin very early in the morning and are able to get some incredible images at the Magic Kingdom or where ever your heart's desire.
July 22-28 with Limited Availability
Want me to come with you on your DISNEY vacation any OTHER time of year?
Simply call and ask about the possibilities!
For more information about Phelan McDermid Syndrome, visit their website www.pmsf.org
For images of our last trip to Disneyworld click HERE.
|Jacob and I on the beach in Destin, Florida|