Joy, mom of Trevor

by Joy Sorrells
(Thomaston, Georgia )

Yes it's very real! We deal with it every day of our lives!

Until you have a small child that suffers from this you have no idea how devastating it is! Imagine if you will starting every day of your life struggling to get on one pair of socks until they feel just right on the foot. It takes us over an hour and Trevor, by that time, is crying and I am just plain frustrated. Imagine from nowhere it hits you and you just can't stop jumping or spinning. Trevor doesn't feel pain like we do and the things that hurt us really bad Trevor just shakes off and moves on like it was nothing. That scares me that he will need medical care and won't get it because we don't know how bad it is. He fell 3 feet from his bedroom window after dropping a toy out it and went out after it because he doesn't fear pain!

Imagine having every day sounds cut through you like a knife causing excruciating pain; Trevor lives with it everyday! Imagine walking into your mom's kitchen as she's baking a fresh batch of cookies remember how wonderful they smell? Well now imagine being Trevor walking into mom's kitchen and getting sick from that smell. Trevor lives this everyday of his life!

Imagine not being able to play outside on a playground at age 5 because of the light from the sun, the sounds of the kids screaming and crying, the feel of the equipment and the inability to cope with all these things going on within you; Trevor lives it.

I don't know what will ever come of this with Trevor; will he out grow it or will this always be his life? I do know that these things are very real in his life. They consume so much of his life that he can't be a normal little boy. You won't see Trevor on a ball field tossing a ball with friends. He will never be in the kitchen helping Mom cook a batch of cookies or in the yard helping Dad cut the lawn. These things to Trevor would be impossible. Without treatments for these conditions or deficits I feel there will be no future for Trevor as an adult.