Perseverance and awareness: Stacy's story

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Stacy Fowler’s life changed forever this year when she learned that she had developed Tourette Syndrome, but she has turned adversity into opportunity as she prepares for a day dedicated to her condition’s awareness on Thursday.

Tourette Syndrome is a neurodevelopment disorder that becomes evident in early childhood or adolescence. It is part of the spectrum of Tic Disorders and is characterized by motor and vocal tics.

Stacy took it upon herself to spread word of the syndrome in her own way as Tourettes Awareness Day approaches. She has sold bracelets in an attempt to raise five hundred dollars to help find a cure. The bracelets are aqua blue in color with the words “Tourettes Awareness” in white and sell for three dollars apiece. As of the weekend, she has nearly reached her goal.

“The bracelets were completely Stacy’s idea,” said Stacy’s mother Marcy Fowler. “She is using it as a positive experience to raise awareness and show people that she is not going to let this hold her back.”

The project is just another piece to the busy life Stacy and her parents have led since she was diagnosed in the fall shortly into her freshman year of high school. Tourettes, which can often be hereditary, did not run in the Fowler family and was unfamiliar territory at the time.

“Some days are worse than others and it can be a struggle,” said Stacy’s father Greg Fowler. “She went from being a pretty normal kid who played sports until things suddenly started to get worse. It is just so tough to see your kid healthy one day and then have to go through all of that the next. That has been the hardest part for me.”

On top of limited participation in cross country, Stacy has been an active member of 4-H and FFA, shown pigs and participated in the Madison County Fair. She competed at the state level as a member of the Milk Quality team for FFA and earned outstanding grades despite the fact that she had to miss a sizable portion of school. Stacy was able to view her courses live on a webcam from home to stay up to date.

“That was such a great thing the school was able to provide for us,” said Greg. “She was able to see what was going on in each class and the teachers could communicate with her through a microphone and Stacy could communicate back.”

One of the biggest concerns for the Fowlers at the outset was how Stacy’s new syndrome would impact her school life. They were worried that she would have to repeat her freshman year because of the time she spent in the hospital away from the classroom. But with the technological assistance from MCISD as well as their daughter’s determination, Greg and Marcy saw Stacy not only survive, but thrive.

“As parents, we have obviously been very emotional about the whole thing,” said Marcy. “But Stacy is the one that keeps telling us that it is going to be okay and it is what it is. She has not let it hinder her academics or extracurriculars. We thought it might be smart for her to take a break from 4-H and FFA, but she would not hear of it.”

Greg and Marcy have immersed themselves in knowledge of the syndrome and can attest firsthand to the importance of public awareness.

“It is difficult because you worry whenever you go pretty much anywhere,” said Greg. “It is pretty rare and people do not usually understand unless they have been around someone who has it. Stress can also elevate it and you can usually tell when someone might be staring or talking under their breath.”

“It can be frustrating when people do not know why someone might be acting out like that, especially in a small town,” said Marcy. “But the support system through the school as well as Stacy’s friends have been amazing.”

Stacy was able to return to school on a regular basis for the most part near the end of January. Every Tuesday, she attends a Comprehensive Behavioral Intervention for Tics (CBIT) program in Houston. This is a rare program offered at a limited number of locations that the Tourette Association of America describes as “a powerful technique demonstrated to reduce tic severity” and “a step forward in the modern understanding of how the brain can be shaped by the environment.”

There have been many medical advancements in recent years, but the condition still remains mysterious in many ways. For example, it can be caused by a number of different things. The Fowlers are still in the process of learning why Stacy developed the condition in the first place.

“We’re just taking it one day at a time,” said Greg. “It is not something that can be easily explained or understood like when her arm was in a cast and she got it off in six weeks. We have been going to different doctors for a long time and we still have not figured out what caused it all.”

One of the most difficult aspects of raising awareness for Tourettes is the fact that there are said gray areas with the condition, even for the experts. But this is all the more reason to spread the word; to better exercise understanding and compassion as bystanders and provide the finest and most practical medical options for the afflicted.

For a better understanding of the condition, to get involved or make a donation, visit the Tourette Association of America online.

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