Jesse’s Story – written by his Mum
My son, Jesse now 21, was diagnosed at the tender age of seven with stargardts, after failing a vision test at school. At the time he was playing baseball and continued until the age of nine. He was a second baseman and did well (making the all-star team, twice) but when it was time to move up to kid pitch, his Dad and I (concerned for his saftey) decided it was time to stop. Eager to keep him involved in sports, we signed him up for soccer. Using the common sense of the bigger the ball, the better he will see it . We were determined to try a give him as normal a childhood as possible! Every year before school started, I would contact his teachers and explain Jesse`s condition and most were very willing to help. During elementary and part of juinor high this worked out pretty good. By 8th grade he was 20/150-200. I knew it was time to get the school more on board with aiding him. We sat dowm with the high school guidance counselor and she worked with Jesse on how best to meet his needs. They managed to provide many of his books on tape, a CCTV for home work, enlarged SATs, a student to read to him when necessary and alot of moral support. Of course, it wasn’t perfect. Doing all this, it also made it clear to the rest of the students that Jesse had a problem! Most were unaware he was legally blind and he wasn’t too keen about telling people at the time. I have seen him go through all the emotions, anger, embarassment, frustration, tears and resentment. High school is hard enough without the challenges of having Stargardts. We were fortunate that he has a very supportive group of friends.
Being unable to drive has definatly been the biggie for him. Every time one of his buddies got thier license I would see that look on his face and my heart would break for him. But to his credit, he would always smile and congratulate them. It was when his younger sister got her first car that he cried. I guess it was just too close to home for him.
During those high school years he continued to play soccer and also joined the track team. In his junior year he was a starter for the soccer team and they were the first district champions for our school. But track became Jesses passion!! He competed in the 100 meter dash and was on three relay teams. Because it was hard for him to see the markings on the track ( for passing the baton) one of the kids would stand in that area and be a marker . Then as he became more comfortable he just used his own instincts. By his Juinor year he was starting to turn heads, because whatever he lacked in sight, he made up in SPEED! At the end of his Juinor year he had a goal. To break the school’s 100m dash record and to win the 100 m dash at the county finals (his time was 10.72 seconds). Well, I can proudly say he did more than that. He did break the school record but also the county record and went on to compete in the State meet. In 2004 he was the 13th fastest 100m sprinter in the state. He was awarded by his school the Courageous athlete award and was given a standing ovation by his classmates.
He went to Muskingum College and they provided him with help through the Plus Program. He was thinking of becoming a teacher but after that first year he realised that this particular career was not for him, nor the college.
At this time he is working for a local company and is head of the mowing/grounds crew. They are aware of his eyesight and have been understanding. He drives mowers, tractors and on occasion a pick-up truck around the company grounds. This works for now, as he is trying to find his way in the world. He is trying to decide what his next move will be as far as a career goes and is a bit frustrated on what he is going to be able to do with his limited sight.
Believe it or not, he became a volunteer fireman in our town. He loves it. I had my concerns (still do) but as one of the other firemen told me you can’t see in a smoke filled house and you rely on other instincts, so he’s already ahead of the game . As much as he would love to be a real Fireman, he knows that is’nt possible. But doing this makes him feel good.
He continues to surprise me with his strength and I pray he never loses it. Yes, we still have those bad days, but somehow he finds the WILL to not let this beat him.
Sincerely, Jesses Mom