Letter from Katy Carter

Just over a decade ago, our family ended up on a journey that we never expected. Our younger daughter, Rhiannon, was diagnosed with Oligoarticular Juvenile Idiopathic Arthritis. Like many other families, we never knew that kids got arthritis and we had no idea what was in store for us. For a long time, we put our heads firmly in the sand about what this diagnosis meant for Rhiannon. When we would go to the doctor, our only focus was how much longer she would be on medications and when this nightmare would be over. We had a normal life to get back to, after all.

When Rhiannon was 7 years old, she wanted to meet other kids with arthritis. She wanted to know that she wasn’t alone, that there were other kids just like her. This was a defining moment in our lives. Of course she wanted to meet other kids. Of course she was feeling isolated. She had this strange disease that none of her friends had ever heard of and didn’t understand. As her mother, I wanted to make everything perfect for her little life and protect her from the reality of her diagnosis. But, I couldn’t be that friend her age who “gets it.” The person who understands her pain or what her medications make her feel like. I wasn’t quite ready to let go of my baby, but I sent my 8 year old off to camp with a smile on my face and hope in my heart. I missed her every single moment of that week. I couldn’t take a breath without wondering if she was ok. After what seemed like forever, she came home. She talked endlessly about what a wonderful time she had, the awesome friends she made and how she couldn’t wait to go back. Arthritis camp was a huge, life changing success.

Before Rhiannon left for camp, she had some anxiety about what was going to happen. We all did. But the Arthritis Foundation provided us with plenty of information about what to pack and what activities would be available for the kids. In addition, there would be a medical team taking care of Rhiannon’s needs. I didn’t have to worry about her getting her medications or any problems that might come along the way. They have nurses there 24 hours a day who can handle anything. Sometimes we joke about how she gets better medical care at camp than she does at home. They understand Rhiannon’s condition and are in contact with her own doctor back home, if necessary. Rhiannon was able to relax knowing that all of her medical needs were taken care of and she could just focus on having the time of her life.

My daughter has made friends for life. She has kept in contact with them through the years and they always have one another to share the challenges and joys of their lives. They have formed quite a strong bond. We had hoped that Rhiannon would find friends who understood her. What we didn’t anticipate is the many other benefits she has received from camp. Following her experiences at Arthritis Camp, Rhiannon has become a strong young lady who has leaned to advocate for herself. From the confidence she gained from being at camp, Rhiannon began talking about her condition. She has spread awareness speaking to crowds sometimes in the thousands. She has been on the radio and national television. She has been to both our state capitol and Washington DC talking to our representatives about legislation that will help kids with arthritis have better access to health care. In 2015, Rhiannon was the National Honoree for the Walk to Cure Arthritis. All of these accomplishments can be traced back to the self-confidence Rhiannon gained by being at camp. We are truly thankful to the Arthritis Foundation for the opportunity Rhiannon had by going to camp. It has changed her life forever. She has learned to take the challenges that arthritis brings and use them to make her a strong, brave girl. These are attributes she will have for the rest of her life.

Katy Carter