The Next Chapter In The Story Of Garrett, A Boy With EB

 From the first day I started working with Garrett and his family to document life with EB, nearly 3 years ago, I have become personally connected to this disease and the challenge of raising awareness for EB, bringing some attention to all of the people who suffer from it’s cruel nature. Years ago I made a promise to the Spaulding family to continue telling Garrett’s story until either a cure was found and Garrett was healed, or he passed away from it. 

After finishing the story, ‘Garrett: The Boy Beneath The Bandages’ I have kept in close contact with the Spaulding family. Recently Garrett’s mom told me of complications caused by Garrett’s ankles. As many of you may or may not know Garrett at one time could walk on his feet, even though frozen in a ballerina pose, he would walk around on the tips of his toes, play basketball for short periods of time which most often resulted in pain and blistering. Garrett spent more and more time relying on his wheel chair rather than walking. This caused his ankles and tendons to atrophy. He could no longer put any weight on his ankles without risking damage to the bones and tendons. 

Garrett’s parents began researching how to correct the problem. There were many questions and concerns to be addressed. What type of surgery? Will it involve a cast? Physical therapy? How will it affect Garrett’s skin and risk of infection? Any parent or care giver who knows EB will understand the nature of these concerns. After their meeting with the Orthopedic surgeon all their questions and concerns were addressed. Some to their approval and others not. 

Sitting in the room photographing the meeting I literally became distracted listening to the doctor explain the procedure. Honestly, I was so fascinated by the simplicity of it. I thought it was going to be much more involved. Modern day medicine has made it possible for Garrett to have a short in-and-out one day surgery.
I have been granted access by Garrett’s doctor and the hospital administration to document the whole experience, the surgery, his recovery, physical therapy to build the strength in his ankles again. The story will not end there. I will also be spending time in the Spaulding household again following Garrett’s recuperation.
I am very excited to be working with Garrett and his family again. It is a story that is close to my heart, and a disease that I want everyone to be aware of, a disease that I hope can be cured within Garrett’s life time. Please share this blog post and pass it on.  

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