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news News Thursday, July 4, 2019 Wednesday, July 3, 2019 5:34 PM - Wednesday, July 3, 2019 5:34 PM

Nicole's story

Patient with Charcot-Marie-Tooth shares her experience with Shriners Hospitals for Children

Nicole's story

By Nicole

Hi, my name is Nicole and I am 18 years old. I am a patient at the Shriners Hospitals for Children in Salt Lake City. I have a condition called Charcot-Marie-Tooth type 1a muscular dystrophy. I was formally diagnosed when I was 15 years old.

My first appointment at Shriners Hospital was when I was 16 years old. I went there because I noticed that after gym class, it was extremely painful to walk, specifically on my left foot. One day the pain became too much to handle so I asked my dad to make me an appointment at Shriners Hospitals for Children — Salt Lake City. I knew about Shriners Hospital because my sister was a patient many years ago. She too has muscular dystrophy. I saw how they treated her and how they gave her the best care possible. I knew it was the place I needed to go. I have since received care from physical therapy, POPS (who make my orthotics), surgical services and the motion analysis center.

My favorite part of the hospital is the sense of belonging that I feel because I know that I won’t be judged for walking a little bit different. Shriners Hospital has helped me keep my confidence throughout high school, even though I do have a disability. I also love how every staff member makes it their top priority to make the patients feel as at home and as comfortable as possible. They make sure to give their all while working with the patients and their families.

Some of the ways Shriners Hospital has helped me is by correcting my left foot so I don’t walk on the outside of it. I have had two surgeries so far, both tendon and bone work. I have also gone through many appointments with the physical therapy department, which has helped my walking improve immensely.

Thanks to Shriners Hospital I have been able to participate in so many extracurricular activities, such as serving as secretary for my school’s FFA chapter, many outdoor activities (hiking, biking and working at Wheeler Farm once a week), and participating in my school’s stage production class in which I help build the sets for the theater department. Shriners Hospital has also made it easier for me to keep up with my peers throughout my high school experience. Although, many times my friends are the ones who have to tell me to slow down because I am moving too fast and they can’t keep up with me.

Having people support the hospital, to me means that so many other kids just like me get to experience how amazing the hospital is. It means that I am able to do the things that I love to do most. It means that I will continue to have a place to go where I know I can truly be myself.

Without the generosity of donations, I wouldn’t be able to receive the care that I have and will be receiving to lead a somewhat normal teenage life. Thank you every donor so much for helping me and many kids just like me have the opportunity to have a sense of normalcy in our lives, and for helping us remember that it’s okay to be a little bit different from everyone else.

Nicole with classmates