SKI FREEZE 2018 TO GRANT KELBY’S DREAM
A Note From Kelby’s Mom!
Kelby Grace was a very active outgoing kiddo. She loved all sports and she was very good at all of them. At the age of 5, she started hurting in her wrist. It would stop her from playing. I took her to the doctor and they did lots of blood work and a few days later they called and said there is something wrong, but we have no idea what it is.
Kelby started running a very high fever of 105 everyday about the same time. She also had an awful rash that covered her body. Kelby got to where she didn’t want to walk. She couldn’t do every day activities like getting dressed or opening doors. Kelby has had to spend many days and nights in the local hospital and no one could figure out what was wrong with her. I told her PCP that if something didn’t change my baby was going to die. So, Kelby’s medical chart was sent to Arkansas Children’s Hospital in Little Rock. We met with a Rheumatologist named Dr. Morris. She said I’m 90% sure I know what’s wrong with Kelby', but we are going to do what seemed like hundreds of tests to rule out cancers and other illnesses. She said that Kelby had Systemic Juvenile Idiopathic Arthritis. (Stills Disease). She told us we could not start a treatment plan until she had swelling.
The next week Kelby’s knee started to swell. We went back to Dr. Morris and she started Kelby on Kineret. Once the insurance approved the medicine and Kelby received her first shot she was a new kid. She could walk again and use her hands. Her fever broke. All was happy… Then 3 years later Kelby was back in the hospital. Our nightmare was back. They ran more test and changed her medicines. Kelby has had many joints drained and steroids injected into the joints. She was also placed on steroids and they did awful things to her body. She gained lots of weight and was mad at the world. Kelby was being bullied at school because she looked different and had gained lots of weight. Kelby then made the brave choice to stand up in class and let everyone know what was wrong with her in hopes they would stop picking on her.
So here we are 5.5 years later and many failed chemotherapy drugs and biologics. She now has a port and gets, every 4 weeks, an infusion of Remicade and takes 5 pills every day. We are still trying to find the best course of medical care for her. She just had her hips drained on 12/5/2017 and we were told that Kelby has the worst hip he has seen on a 11-year-old. Kelby has learned to live with the daily pain and all the procedures and hospital stays. She is one of the most loving and caring children I have ever met. We hope one day there will be a cure for this awful disease so no one else must suffer like she has the last 5.5 years.
She is so thankful for the Dream Factory and the opportunity they are going to give her. We will forever be thankful.