玛丽亚·阿基诺-特拉斯(Mariah Aquino-Truss)只有五岁的时候，每天都非常痛苦，她告诉妈妈托里(Tory)，她“不想再待在这里了”。Imagine hearing such an admission from your young daughter who was newly diagnosed with a form ofjuvenile arthritis(JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form ofankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
“Getting in touch with the Arthritis Foundation saved my life,” said Tory. “The people at our local office helped us so much and I will always be thankful for them. Eventually, our local office lead us to our firstWalk to Cure Arthritis, our firstNational Juvenile Arthritis Conference,JA Campand so much more.”
托里、玛丽亚和她的姐姐毛里乌娜组成了她们的“步行治疗关节炎”团队，“玛丽亚的搬家公司”，并开始为关节炎基金会筹款。2012年，玛利亚在匹兹堡的“步行治疗关节炎”活动中被评为当地青年获奖者。他们开始举办一年一度的狂欢节，以支持他们的步行治疗关节炎团队，自2011年以来已经筹集了超过2万美元!
“当玛丽亚在JA大会上看到全国青年获奖者的舞台上，她告诉我这就是她想要做的。这就是她想成为基金会的一员。”“当我们得知她去年被选为国家荣誉时，我们简直不敢相信!”2016年，在亚利桑那州凤凰城和宾夕法尼亚州费城举行的JA大会上，玛利亚自豪地上台接受了她的全国青少年荣誉勋章，期待着为像她一样的孩子们发声。
In the last few years, Mariah, now 11 years old, has also become increasingly interested inadvocacy. The entire family has participated in both local, state and national advocacy events, including theAdvocacy Summitin Washington DC. In learning to tell her story, Mariah has been able to find her own voice and speak to her representatives about her experiences, how important access to care and treatment options are for people with arthritis.
“There is a powerful feeling you get from advocacy and those summits. Sometimes results may come slowly – sometimes not at all! But you’re in a position where you are the face of all the numbers and dollars that are being debated and your voice can be heard,” says Tory.
Today, Mariah is feeling much better after starting onbiologicsand for the first time since her diagnosis, some of her medications have been lowered. Mariah is looking forward to theWalk to Cure Arthritis in Pittsburghthis weekend with her “Movers,” and performing with Mauriauna and their musical show choir, The StrandTastics, in their summer music show. Mariah has been performing for the last two years with the group, having to sit out one year during a bad flare, but is excited and energized to do something she loves.
Mariah, Mauriauna and Tory will also make their way to the2017 JA Conferencesto reconnect with their friends, meet new families and learn more about new medication, treatment options and updates about the Arthritis Foundation. Participating in their fourth conference this year – Tory believes the conference has helped each one of them individually, including Mauriauna, being around and emboldened by others that are going through the same experiences.
At 12 years old, Mauriauna has participated in sessions at the JA Conference alongside her sister, learning more about the disease and how to express her feelings. “Participating in the conference has helped Mauriauna so much, especially the sibling sessions that Lauren McAllister and Logan Lentini hold. These sessions were really a blessing, and Mauriauna has learned that she is just as important as her sister, that her feelings, concerns, experiences and voice truly do matter.”
“All I want for both my girls is for them to feel empowered in this world,” says Tory. “All of these opportunities – from walking with our team to sharing experiences with our representatives – have allowed each of us to raise our voices and stand up for kids and families like ours.”