It all started when me and my twin were born two months early. Everyone knew she wasn’t going to make it because of her encephalocele but I was supposed to be okay. As soon as I was delivered the doctors started naming off many things that were wrong with me and I was rushed to the NICU. I was then diagnosed with Goldenhar syndrome and hemifacial microsomia.

I went on to have open heart surgery around three months of age, many other little surgeries including g-tube, fundoplication, all the things. With my total surgeries coming out to 23, I have had many small ones and many big ones. They tried to use a rib graft in my jaw but that dissolved and then I had multiple ear surgeries and smaller jaw surgeries.

At 5 years old I had a golf ball sized brain tumor removed. We were going in for my regular MRI for that year and as we were walking back to our car, we got a call saying we needed to be back in the morning to remove the brain tumor they had found. They didn’t know if I was going to walk, talk, or have to relearn everything but I walked out in 3 days, it was a miracle.

I went on to have many more surgeries including a distraction of the jaw, etc. Two years ago in May of 2022, I underwent a 14-hour surgery to get a TMJ titanium prosthetic implanted in my right jaw and a skin/tissue flap on my face to cover the whole area. This was the hardest surgery I have gone through since I was older and knew what was going on. I also was a high school girl who would go back to senior year looking like a different Riley. However, no matter how hard the recovery was on my body, I ran cross country 3 months later and excelled my senior year.

I committed to study at Saint Louis University studying medical science in hopes to be the same doctor that has changed my life. Dr. Patel at the ACPA Approved Team at Saint Louis Children’s Hospital treated me like one of his own kids and he will forever be one of the most important people in my life. I finished my freshman year at SLU with all A’s, ran a half marathon, and now I am shadowing jaw surgeries all summer. What a blessing my life has been from God, and I truly would not be where I am today without Him. I always questioned “why me?”. But now I know.

Riley K.

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