“I came to this project with open eyes to help others, especially young children, to understand and cope with rare diseases - because I have one,” Charlie Mock shated during a Rare Disease Awareness event held at Suzy Q’s Sweet Creams and Coffe on Thursday, Feb. 28. National Rare Disease Awareness Day is held the last day of February because of Feb. 29, a rare day.
With the assistance of her Mena Middle School EAST instructor, Melissa Lunsford, EAST students Elizabeth Crawford and Alyssa Wilson, and a host of community leaders and supporters, Mock shared her story.
“I don’t tell my story often, and I do not use it as an excuse or to seek attention ... I am here for the sole purpose of helping others,” Mock said. Mock reiterated the importance of letting other who suffer from rare diseases to know they are not alone, and in Polk County, the number of patients with rare diseases is approximately 510, with a span of eight years to be correctly diagnosed.
Mock was four years old when she was diagnosed with Multiple Hereditary Exostoses. “This is where bone tumors grow on long bones, and in my case, short bones and through muscles in my entire body. This is a rare disease with only 1 and 50,000 people affected. At any time, the tumors can become cancerous,” Mock explained. As Mock grew older, the condition of her disease progressed, leaving her on most days in a lot of pain. “I was always in constant pain and I felt alone. The doctors suggested surgery, which I did not want. But, I also did not want to live with constant pain. It is not fun. I had my first surgery on my wrist in April 2018, my second was on May 31 of the same year on my right knee. These surgeries had a quick recovery time, but the third surgery in July of 2018 did not. I woke up in extreme pain due to the nerve damage in my leg. My leg felt like it was burning and I was mad because they did not believe the pain I was in ....I could not move out of my bed at all. None of the medications worked.”
It was during that time Mock shared about the depressive state she was in and simply wanting to give up. “After wearing a leg cast for four weeks, I still was not able to bend my leg and I had extreme foot drop with the cast removal....I felt like everything was against me...but after time at physical therapy and with the help of Michael, I was able to walk again.”
Mock had her fourth surgery in October, but with limited complications.
Mock contributed her fight against her disease to the ongoing support of her family, her church friends, community, her surgeon, “and most of all God. For when all I wanted to do was give up, I knew there was more to life. He was with me in my darkest hours...It was by the grace of God that I have Dr. Nicholas in my life. He once told me that he was my sculptor and I was his masterpiece. There is no cure, but I have hope.”
“As a parent, you question so many different things. There is a grieving process, but Charlie and I have learned over the years to embrace her condition and not consider it a curse,” Janette Bernard, mom of Charlie, said. “This has allowed us to have a platform to reach other people. We have each accepted what we have been dealt and consider ourselves to be blessed. She will touch other people. We want to help others embrace their condition. We have allowed Charlie to take ownership of her disease. She makes the decisions. After last fall, she sated she will not longer have surgery She will not go through with this again. But she has a surgery scheduled for Thursday, March 7. This has become her normal, and she will use this to touch others in our community. There is hope. Alone she is rare, but together, we are strong. We are allowing her to use her experiences to touch someone else’s life,” concluded Bernard.