A junior at Chico State University in California, Shane Cox might appear like just your average 20-year-old student. But when you take a closer look, you’ll notice something different about him. It’s not the handicapped plate on his pickup truck or the Humira injections he gives himself that really sets Shane apart from his peers. Instead, it’s his dedication to giving other kids with JA hope for their future that really makes him special. It’s his pay-it-forward attitude that made it easy to convince him to be the 2021 National JA Conference chair. And to make it even better, he’s splitting the role with his mom, Jenn.
“I remember being a kid and just feeling invisible,” says Shane. “When my mom found the Arthritis Foundation, and I started seeing that there were other kids like me — who struggled to walk or didn’t know how to even tell people about their disease — I started to come out of my shell. I found a place I belonged, and it helped give me confidence and hope.”
For Shane’s mom, Jenn, she learned firsthand just how difficult it can be to raise a son with a chronic disease. From the years of wrong diagnoses and countless missed school days to the hurtful comments and feelings of exclusion, Jenn has navigated the often rocky road of parenting a child with JA.
“It’s so tough in the beginning,” says Jenn. “We spent so much time just searching for answers. When you finally have them, you feel both relieved and overwhelmed.”
Together, Shane and Jenn are helping other families overcome that initial feeling of worry and fear that comes with a JA diagnosis. In their roles as JA Conference co-chairs, they are each sources of strength for others. Jenn is able to understand how parents are feeling and help reassure them that they are not alone. And for the kids, Shane gets to be the young adult they look up to — feeling hopeful that they, too, will have success, happiness and control over their arthritis.
“I hope that when families see us, they realize that the pain and worry that comes with JA doesn’t have to be the defining thing about them,” says Jenn. “Instead, their diagnosis means they get to be part of a new community, a new family and a new mission.”
From Parent-Led to Patient-Led
As a mom, Jenn naturally took the lead when it came to Shane’s care. She diligently managed a myriad of pills and medical appointments. She wrote school excuses and made arrangements for makeup tests or missed class work. But as Shane grew into a young adult, managing his disease and all the trials that come with it became less of a tag-team event and more of a solo mission.
“My rheumatologist was actually the one who suggested I begin leading my care instead of my mom,” says Shane. “I was 16 or 17 and I think my doctor knew it would take time to totally transition, so we began the process early.”
Like any mom, Jenn was initially scared at the thought of not being involved in Shane’s health care. But by transitioning slowly, she was able to pull back more easily, one step at a time. And both she and Shane slowly redefined their roles.
“I kept attending appointments until Shane was 18, but he led the discussions with the doctor,” says Jenn. “By the time he was an official adult, he started making his own appointments and going to them alone. It wasn’t easy to let go at first, but I knew I had to. It’s still hard at times, but he’s doing a great job.”
While Shane is now in charge of his own health care, he hasn’t stopped looking to his mom for guidance and support. In fact, he often speaks with her about changes in his care and relies on her input when making decisions.
“It’s a different relationship now, for sure,” says Shane. “But I trust my mom’s advice. She knows a lot more about this world than I do, so I don’t mind asking for her opinion or her help when I need it.”
Moving Forward Together
Shane and Jenn have been longtime members of the Arthritis Foundation family. For over a decade — since the day Shane was diagnosed — they’ve been familiar faces at camps, conferences, family days and more. As Shane grew up, his relationship with his mom evolved, and his commitment to making the most of life and helping others who are just beginning their journey grew stronger.
Jenn has been Shane’s biggest supporter, helping him learn to take control of his disease and advocate for his health and happiness. As Shane gets ready to celebrate his 21st birthday this summer, his JA diagnosis that brought so many mixed emotions seems like a lifetime ago — but the memories he and his mom have made during his journey will last a lifetime.
“Sure, there are sad moments in our journey,” says Jenn. “But there are so many wonderful ones that we would never have without the Arthritis Foundation. We’ve travelled across the country and met families who have become lifelong friends. And we got to do it together, as a family.”
For Shane, he’s focused on the future. He’ll graduate from college in 2023 as an environmental scientist. And while he knows that he’ll soon transition away from the JA world, he hopes to spend the next couple of years inspiring kids who are just beginning their journey.
“The camps and conferences made me feel like I was just like everyone else,” says Shane. “It’s through these events that I learned to love who I am and to not be embarrassed by my disease. Knowing there are other kids out there who understand what you are going through is life changing. I’m proud to stand up and be that for someone else, because I know how much of an impact it had on me.” — HEIDI BRAGG