With Mother’s Day a few weeks behind us, I can’t help but think about all of the ways my mother has been a vital support system in my battle against RA. An RA sufferer herself, she’s been a constant source of information and understanding when no one else seems to “get it.” If I didn’t have my mother to help me navigate through the pain, fatigue, and frustration, I’m not so sure I would have gotten to the place I’m at in my life so smoothly.
While I admire moms in general for their dedication to their children, I have a special place in my heart for those who have the added challenge of helping a child cope with disease or illness. Jessica is one of those moms. Jessica’s son, Waylon, was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) when he was just two years old. “We were out eating one Saturday night and when we stopped to get ice cream, I jumped him out of the car,” she recalls, “and rather than stand, he fell to the gravel. He wouldn’t put any weight on his left leg.” Jessica sought out answers, but it was over a month before the diagnosis came back as SJIA. “Those five weeks were excruciating. Knowing something is wrong with your child, but not knowing what it is or how to treat it, is a terrible feeling.”
According to the Arthritis Foundation, SJIA affects approximately 10 percent of the 294,000 children in the
United States suffering from juvenile idiopathic arthritis or related conditions. Unfortunately, it is also the hardest type of juvenile arthritis to treat and often the most destructive, affecting vital internal organs like the heart, lungs, and lymph nodes.
Waylon’s initial treatment involved steroids and Naproxen, which helped him to begin feeling a little better. Jessica had never heard of SJIA before Waylon’s diagnosis, but she was fortunate enough to have a wealth of medical knowledge at her fingertips. “We had a fantastic team of professionals at Cardinal Glennon Children’s Hospital, as well as Dr. Bhargav Kanani, Waylon’s Pediatrician, and my co-workers at Perry County Memorial Hospital. We were surrounded with a very strong medical support system.” All medical diagnoses come with their share of emotional burdens, but since I don’t have children of my own, I personally couldn’t imagine how difficult having a child diagnosed with SJIA could be. “The biggest hurdle was watching Waylon in pain and knowing there was nothing I could do about it,” Jessica admitted. “We were already giving him Naproxen and Tylenol and using heating pads on him and he still hurt. We tried essential oils. I was willing to try anything to help him.”
Waylon’s daily routine began to resemble one that most RA sufferers know all too well. This routine involved taking medicines twice a day, eventually becoming a daily injection. Jessica and her family did whatever they could to keep him comfortable, but Waylon could never be more active than he needed to be in order to get through the day. He managed school and his scheduled activities, but didn’t move any more than he absolutely had to.
Fortunately, after some adjustments and a sampling of different medications, Waylon’s doctors finally found the right formula for him. Now his only medication is an Actemra infusion that he receives once every 8 weeks. After eight years of treatment, 10 year-old Waylon has a routine that looks similar to those of his classmates. He has been able to participate in a variety of extracurricular activities, including Tae Kwon Do, soccer, basketball, and running. And he’s been pretty much flare-free for seven years.
Those of us with autoimmune diseases often try to find hobbies that accommodate our limitations, but Jessica says that she’s never had to look for “SJIA- friendly” activities for her son. “Waylon knows that whether it be in a sport or PE in school, if an activity starts to hurt a joint to stop doing it. His teachers and coaches know this, too. He has not had to stop an activity yet!”
SJIA, like RA, is an invisible illness. People are often shocked when they discover that Waylon has arthritis. “They don’t realize that kids can get arthritis.” In a final interview question for Jessica, I asked her if she was doing anything specific to spread awareness for her son’s disease. “I don’t know that I would be so formal as to say that I am helping spread awareness for SJIA, but I am always willing to talk to people about our experience, to share what has worked for us, what we have tried, etc. I have become a part of Genentech’s InspiRAtional Moms. I have also given my business cards to Waylon’s rheumatologist and asked him to pass them on to parents of other kids who have SJIA.”
Jessica, like the countless other moms with children suffering from serious diseases, is an example of how a challenging moment can be turned into a source of inspiration and strength. Arthritis is not an easy thing to live with, both as the sufferer and as a close relative to someone who has it. I understand Waylon’s pain all too well, but I don’t doubt that he’ll look back on his experience with juvenile arthritis one day and realize how lucky he is to have a mom who’s willing to give him as much of a pain-free life as possible.
For more information and tips for supporting a child with SJIA, visit www.sjiainfo.com.