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Triumph Over Tragedy: Living With Tourette Syndrome (Part 2)

Katie is on a mission to get a service dog to help with her Tourette Syndrome and she is looking for help.

of Katie Shaw's story as she lives with Tourette’s Syndrome.

Katie Shaw is luckier than many children who are diagnosed with Tourette’s Syndrome. Why? When she was diagnosed at 15, she was able to verbalize to her doctors the symptoms she was having. In younger children, it's so hard to explain what is happening in their bodies and how they can't control tics that are manifesting.

But, since she was in high school and could articulate the tics she had no control over to her doctors, a diagnosis came faster than it does for many children who suffer from Tourette’s Syndrome.

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For Katie, her tics started as hand shaking and soon progressed toward head banging. Worse still, she and her family moved to San Ramon in her Sophomore year of high school. Not only was she experiencing tics that others noticed, but she was the new kid at .

After three semesters and her diagnosis, Katie eventually switched to Venture to finish out high school, including AP classes she began at Cal High. Between doctor appointments, side effects of medication, and anxiety, there was just no other way for her to complete her high school education.

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"By the time I went to the neurologist a second time, I was sniffing and clearing my throat (both vocal tics) and was given the official diagnosis of Tourette’s," Katie said.  

"I attempted a variety of medication with the neurologist in Oakland and then when they were out of ideas I went to a movement disorder specialist at Stanford.  I also saw an acupuncturist during this time. I had had no success on medication and so for a period of about four years I coped without medication. This last October, however, after the complex tics I experience became very severe and debilitating, I began under the care of a pediatric neurologist in Seattle who specializes in Tourette Syndrome."

Katie is now a college student living in her own apartment in Seattle, while attending Gonzaga.

“I have always been good in school, even when it was difficult for me to attend classes. Both in high school and at college I have re-taught myself material as necessary and I currently spend a great deal more time than my peers on schoolwork. I received nearly straight A's in high school and I currently have a 3.74 GPA at Gonzaga and I'm on track to graduate with honors in the spring. While it hasn’t always been easy, I have never let my disability get in the way of my education,” Katie explains.

Katie’s plans for her future are clear. She wants to teach special education and help other children who suffer from a disability. To meet her goal, Katie plans to pursue her teaching credential and Master’s Degree, a task she wants to undertake in 4 semesters. After her coursework, she plans to teach elementary children with severe disabilities.

Katie’s life is not easy. She constantly has to work to “mask” her tics, which creates high anxiety. Katie is always “on” and cannot simply let her body relax, especially when she is out in public where people judge her without knowing she has Tourette’s Syndrome.

She is now on a mission to get a service dog to help her navigate her disability and life. Having a service dog will decrease her need to always be hyper-vigilant and will greatly reduce Katie’s anxiety level in public.

"The dog will automatically alert people to the fact that there is something different about me," Katie said. "Tourette’s is a virtually invisible disability. Until I start ticcing, there is no way for anybody to know there is anything different about me. In crowded spaces people come up right next to me and I have even had strangers get on the same escalator step as me in crowded malls. The second somebody I don’t know gets within arms reach, my thoughts automatically go towards 'don’t tic,' 'don’t do anything that could hit them,' 'don’t move your arms.'"  

"It is a lot like having a very very bad itch; eventually it consumes every thought and it is all you can think about until you scratch the itch. Not having to constantly be aware of everybody around me and constantly having to keep track of all of my limbs would be unbelievable. A Heeling Allies service dog will be trained to provide a buffer space, walking and standing a small distance away from me. This will discourage people from getting too close to me, even in crowded situations.’

To realize her dream of getting a service dog, Katie has raised $2,475. Katie and her family are currently working on a fundraiser dinner through Cal High’s school choir, where Katie’s sister is a member. Katie needs $20,620 for training, equipment, and team training in order to make her dream of getting a service dog a reality. You can help by visiting Katie’s fundraising page: adogforkatherine.vpweb.com.

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