What makes you stronger than arthritis? We asked this question to the kids, siblings, parents and caregivers that attended this year’s NationalJuvenile Arthritis Conferencethis summer. We know thatanyvictory is worth celebrating, whether it is being able to tie your shoes in the morning or walking the Walk to Cure Arthritis course. Sometimes it’s not a physical feat that is accomplished, but being able to attend school more or finding a new passion for music and art.
Most important however, is understanding that every person’s situation is different and unique and should still be shared and celebrated. “After all, that’s why the JA Conference was created. To give people the opportunity to discover that JA doesn’t define us, it doesn’t control us and it doesn’t stop us,” said Colleen Ryan, 2016 JA Conference Chair. “Together we build each other up, held one another’s hands, been a shoulder to cry on and a much needed sounding board. Together we are strong. Together we are tough. Together, we are champions!”
Alexis Fox was diagnosed with juvenile idiopathic arthritis (JIA) when she was just 13 months old. With an avid love of gymnastics, music and art, she pursued competitive gymnastics up until she was 12 and her rheumatologist recommended she quit altogether. Cortisone shots were not enough, and the impact of the sport she loved was causing pain and flares. Alexis battled bouts of depression, but found her way back through art, music – and finding her own voice.
“I had to make my health my priority, not the gym. When I was about 14, I felt as if I was finally happy with my choice. All my life I’ve had arthritis, I don’t know any other way. Me being stronger then my arthritis wasn’t a choice – I knew it’s what I had to be, “ said Alexis. She continues, “I have never let arthritis hold me back – I have done diving, ice skating, gymnastics, basketball, you name it. As long as I can do it – I will. Arthritis is enough pain physically; I can’t let it bother me mentally, too.”
For Grace Burns of Pennsylvania, her polyarticular JIA diagnosis also came really early on when she was 20 months old. “When I was first diagnosed my parents were told I wouldn’t be a ballet dancer or a soccer player but at 5 I started player soccer and haven’t stopped! I also play lacrosse as well. Has it been hard? Of course, but it’s what I love,” says Grace.
“大约两年前，当我的足球队参加沙滩足球锦标赛时，我意识到我比关节炎更强。我一直在练习，是我们进攻线的重要组成部分，但关节炎有一个不同的计划。在大赛前两周，我的膝盖做了一个计划外的手术。我没想过要上场，但我也不想坐在场边。所以我做了医生让我做的一切，我的身体锻炼，并与之抗争。我不仅参加了比赛，我还参加了比赛，并取得了进球!我知道无论生活中发生什么，我都会战斗，会坚强。我的父母告诉我我有多坚强，但那一刻我自己知道——我比疾病更坚强!”
格蕾丝说:“我想让孩子们知道，他们不必放弃自己的梦想。在我的成长过程中，身边有贾的孩子的例子并不多。事实上，我没有。如果一个孩子在听我的故事，他会说:“你猜怎么着，我不会放弃的，我要做我自己的事情，我是一个斗士!”“那我就高兴了，我们都没有和贾庆林一起白白受苦。我们都可以有所作为。”
Thank you to Alexis, Grace and all the teen speakers at this year’s 2016 National JA Conferences who shared their story! Ready for the 2017 JA Conferences already? Stay in touch by liking our Facebook page for timely updates, scholarship and registration information coming.