When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love of Hamilton, the arts and their newly adopted rescue puppy named Autumn.
Kylie was only seven years old when she was performing in a year-round production of Annie, acting and dancing heavily through rehearsals and plays week after week. Kylie started experiencing foot and ankle pain so severe she couldn’t walk, and eventually told her mother she couldn’t attend rehearsals. Alarmed by Kylie’s admission, Amy took Kylie to the emergency room where she was diagnosed with an ankle sprain. A week later, they saw a podiatrist who promptly put Kylie into a cast for six weeks. Unbeknownst to them, the cast only exacerbated Kylie’s pain and her ankle and knee would continue to swell and radiate terrible pain throughout her young body.
“The podiatrist was confused and said he could no longer help,“ remarks Amy. “The next day, I took Kylie to our wonderful pediatrician who ordered blood work. Two days later, I received a phone call while I was at work. The caller ID reading our pediatrician’s name sent shivers down my spine; I literally froze, as I knew it must be bad for him to call me at work. The pediatrician went over Kylie’s tests and stated that they were all abnormally high and that Kylie needed to see a pediatric rheumatologist immediately. That was where this long, painful journey began. Kylie ended up being diagnosed with polyarticular juvenile idiopathic arthritis at age eight and then fibromyalgia at age 13.”
As Kylie’s sole caretaker, Amy says, “When Kylie was first diagnosed I felt completely alone, lost and overwhelmed. I was uncertain whether or not I was making the best medical decisions for my little girl. I doubted everything and I certainly did not know any of the medical jargon that I am now so familiar with.” Using her resources, Amy worked closely with Kylie’s pediatric rheumatologist and medical team, who helped them both to become more confident in how they handle decision-making and the peaks and valleys of juvenile arthritis. She notes, “Thanks to the Arthritis Foundation, we have a wealth of resources at our disposal in handling this disease.”
She continues, “Being Kylie’s sole caretaker is the best job there is. She and I make a good team. Kylie is a great advocate for herself in school and at the doctor’s office. The biggest challenge is making every decision solo, since there can be some doubt and some occasions where I wish I had a partner to help me make big medical decisions. Communicating with other JA parents has been the best way to help with this. I am blessed to have a wonderful support team of JA moms who I can confer with anytime I need to.”
A year ago, Kylie says, she was in complete pain and agony. “I was barely able to make it through the school day and acting rehearsals were extremely tiring and painful. A few months ago I was feeling a little bit better than I was a year ago.” However, today is a different story for Kylie, now 15 years old and a sophomore in high school. “Today, I am just dandy! I am flourishing like a pretty flower. I am able to participate in dance and varsity cheerleading at my school.”
Kylie is looking forward to a summer vacation at Hershey Park, attending Camp CHAT and the 2017 National Juvenile Arthritis Conference, where she will be reunited with her best friends Jasmine, Emily and all of the other friends she has met through camps and conferences. “My favorite Arthritis Foundation event is Camp CHAT! It is a week of being constantly surrounded by people who know what you are going through and have gone through it, too, but you don’t feel pressured to talk about arthritis. You create lifelong bonds with people who always know the pain you are going through. This week is so vital to my life because it gives me stress relief from everyday life, especially the pain of arthritis.”
Similarly, Amy is looking forward to attending their 8th JA Conference. She says, “It is indescribable to explain what Conference does for our family. Many of my closest friends are fellow JA moms and dads. When you feel that you are at the end of your rope, the only thing that can make you feel better is having a friend who truly understands because they have been there too. JA can seem hopeless, but the Conference gives us hope. Our JA family is our second family and I really don’t know where I would be without them.” At this year’s JA Conference, there will be a number of networking opportunities for moms and dads, including specific opportunities for those who are sole caretakers.
Beyond the summer, Kylie is looking forward to pursuing a career in forensic science and to continue volunteering with her mom in their community. This past winter, Amy and Kylie volunteered by cooking an entire meal for the families at the Ronald McDonald House. They were able to sit with patients and families after, playing games and spreading holiday cheer. It doesn’t take much to recognize the care and compassion this dynamic duo has, not only for each other, but also for the person next to them.
“My mom usually knows when I’m in pain before I know! She’s always paying close attention to me and caring enough to ask about my pain,“ says Kylie. “There are times when I don’t feel like talking and I just want to rest, but there are other times when I just need a hug and a caring voice to tell me it will be okay. My mama fills all this and more. I love you, Mom.”