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Hi, my name is Trevor and I am 4 ½ years old. My mom and dad are going to tell you my story because I am special and am unable to speak to tell it myself. I hope my story inspires you; thank you for reading and being a part of it.
Hi, we are Shawn (Naylor) Slocum and John Slocum, parents of our little guy Trevor. In short, to help you see Trevor as he is, he is a 52 lb. (solidly built) 4 ½ year old little boy diagnosed with cerebral palsy, static encephalopathy and a severe seizure disorder. He is unable to sit, crawl, walk, talk, or play with toys. However, what he does best is help people love him. Strangers are drawn to him when we take him to the mall or out to dinner. People ask us about him all of the time and want to hear his story. It is in the telling of Trevor’s story that we hope you find inspiration. He was an unexpected surprise, but he is loved by all.
Trevor was born and was greeted in life by his grandparents (Jim and Wilma Naylor), his aunt Karen (Smith-Dealy), good friends Gene and Mary Lou (Caton), and of course, his brother (Michael Slocum) who has been his protector and champion since that day. Shannon (Slocum) was unable to miss school that day and came to greet her new baby brother immediately after school. Trevor was 4 weeks early as a result of my PIH (pregnancy induced hypertension). He spent one or two days in the NICU (to this day we are not terribly sure why). Trevor was released from the hospital with me and we all went home.
The seizures started at 10 ½ weeks of age. We spent a year trying to stabilize Trevor’s seizures with various medications and anticonvulsants; none of the medications controlled the over 400 seizures he had every day. John’s sister Cathy (Slocum) told a nurse friend of hers (Dee) about Trevor. She worked for Kennedy Krieger in Baltimore; appointments and arrangements were quickly made to get Trevor evaluated. Trevor was seen at Kennedy Krieger (where he received his first genetic tests) and then at John’s Hopkins. Treatment through John’s Hopkins Keto-clinic required frequent flights (a three day trip each time, about 3 times a year on average) so Trevor’s progress on the diet could be evaluated and documented. Over the course of the two years he was on the Keto diet, his seizures became 90% controlled and now he only has seizures at night (about 4 episodes per night). However, to date, we do not see any gains in skill development.
We applied for SSI. Not once, but twice we have been rejected. Imagine this…sitting across from some government paper pusher who says, “The only way you could get SSI is if one of you quits your job or you get divorced.”
Our next big hurdle will need to be crossed in the not too distant future. Trevor will not be able to sleep in his crib much longer and a twin sized bed will not fit in our room where his crib currently sits. We need to begin evaluating construction options so Trevor can have a room downstairs. It appears that the best option is to build a room onto the back of our room (to keep him close), however, this will be at least a $30,000 endeavor.
John and I are hardworking and honest people and we thank you for taking the time to read Trevor’s story. We will continue to post his progress. God bless you for your support; you are all truly angels.
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