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.
Jenn说:“刚开始的时候很艰难。“我们花了很多时间寻找答案。当你最终拥有它们的时候，你会感到宽慰和不知所措。”
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.”
虽然谢恩现在自己负责自己的医疗，但他并没有停止向母亲寻求指导和支持。事实上，他经常和她谈论护理方面的变化，并在做决定时依赖她的意见。
谢恩说:“毫无疑问，这是一种不同的关系。”但我相信妈妈的建议。她比我更了解这个世界，所以当我需要的时候，我不介意征求她的意见或她的帮助。”
Moving Forward Together
Shane和Jenn是关节炎基金会的长期成员。十多年来，从谢恩被诊断出患病的那一天起，他们在营地、会议、家庭日等场合都是熟悉的面孔。随着Shane的成长，他和妈妈的关系也在不断发展，他对充分利用生命和帮助那些刚刚开始他们人生旅程的人的承诺也越来越坚定。
Jenn一直是Shane最大的支持者，帮助他学会控制自己的疾病，倡导他的健康和幸福。As Shane gets ready to celebrate his 21stbirthday 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
