Payton and Jayden Ghesquiere do all the things you might expect sisters to do: Play with dolls and Legos, go swimming, make up games together, and even occasionally argue. While Payton and Jayden may look normal to outsiders, their relationship is very different than most sisters their age. You see, Jayden was diagnosed with juvenile arthritis (JA) three years ago when she was just five years old. That means that Payton, who is only seven years old now, has lived over half her life helping and caring for Jayden. Because of JA, Payton is more than a just sister, serving as Jayden’s caretaker and best friend.
JA is challenge for all families, and it can take an especially hard toll on siblings. Payton spends time pushing Jayden in her wheelchair, and their playtime is often cut short when Jayden becomes tired. Despite the challenges, Payton remains incredibly positive and supportive, attending almost every doctor, therapy and lab work appointment with her sister. “Payton has graciously stepped up, helped out, and sat on the sidelines,” says Payton’s mother, Karrie. “She has done all this without complaint for over three years.”
Even though Payton is an amazing advocate and friend to her sister, it’s normal for healthy siblings of children with a chronic illness to experience feelings of loneliness, resentment, and even anger. But according to Pamela Degotardi, PhD, a psychologist and professor at Queens College in New York City and member of the executive committee of the Association of Rheumatology Health Professionals, family attitudes can have a major impact on siblings’ emotional wellbeing.
When Payton told her parents a few months ago that she feels less important than her sister, they knew it was time to do something. “I can’t imagine the load this little one has been carrying for her best friend and sister, and all at such a young age,” said Payton’s mother, Karrie. To help combat her feelings of loneliness, Karrie took Payton on a special date. “During our time I was able to talk to her about how much we value her. I told her I knew all of this wasn’t fair,” said Karrie. Jayden also took time to express her appreciation and told Payton it means a lot when she’s there, especially when she doesn’t feel good.
Because Payton has been such a special friend and caretaker to her sister, Karrie wanted to take an extra step to show Payton how much she is appreciated. Then she got an idea: Jayden regularly receives mail from the Arthritis Foundation, family and friends offering well-wishes and support because she’s bravely living a life with JA. Knowing Payton rarely gets mail but is also affected by Jayden’s disease, Karrie reached out to local Arthritis Foundation staff with a request to send Payton a letter recognizing her generous spirit.
Payton was overjoyed when she received a letter from the Arthritis Foundation recognizing her as a Champion of Yes! When Payton’s parents told her she had mail from the Arthritis Foundation she said, “They must have made a mistake. It must be for Jayden. Are you sure it has MY name on it?!”
Most often, stories about juvenile arthritis focus on the child with the disease. The Ghesquiere family would like everyone to remember that arthritis affects entire families. “Please remember that kids get arthritis, too. And when they do, it’s a family affair,” said Karrie. “We all suffer together and we all love one another through all the joy, and all of the pain.”