这个少年比她的少年关节炎更强壮

“我希望我用帕皮斯在天堂。”

2011年，玛丽亚阿基诺 - 桁架的5岁的身体被痛苦的痛苦从青少年特发性关节炎（贾）痛苦，她向她的妈妈发出了那些八个字，其父亲最近通过了。今天，玛丽亚是一个蓬勃发展的高中新生，他喜欢跳舞，园艺和制作TIK TIK视频。她也几乎没有痛苦，致力于崇拜贾倡导其他孩子。她的主要信息给他们，其中一些人在她发出绝望的请求时提醒她自己：“总是希望和一个其他人在那里为你。你不是一个人。”

寻找答案

在3岁时，玛丽亚开始经历颈部疼痛，没有警告。两年后，她开发出左腿疼痛严重，让她带着跛行走路。儿科医生找不到任何错误，并且在一周的观看和等待后，将玛丽亚的家人推到一个骨科专家，其下一个可用的任命几个月之遥。到了Mariah的妈妈，玛丽亚带来了她的脊椎，玛丽亚在她的脊柱上开发了13％的曲线，使一条腿比另一条腿长一条腿。“那位医生确实测试并说他无法找到任何操作，并且玛丽亚可以”恢复正常功能。“我说，'不。我的女儿不能走路。她无法入睡。她失去了五磅，她只有35磅开始。她不能'恢复正常功能。“

At the orthopedist’s suggestion, Tory made an appointment with a rheumatologist at Pittsburgh Children’s Hospital in September of 2011. “As soon as he saw her–her swollen hip, her limp, the inflammation visible on her scans–he knew what it was,” she says. The diagnosis: polyarticular spondyloarthropathy, a form of JIA that impacts the joints, ligaments, and other connective tissues. Her spinal curvature had resulted from severe inflammation and fluid build-up in Mariah’s right hip, which forced it to sit higher than the right.

在这一点上,疼痛阻止玛丽亚走了ing for three months; her mom would carry her or push her in a stroller. When driving, Mariah would ask her mom to avoid “Arthritis Hill”–a bumpy hill near their home–on particularly painful days. Then came the comment about joining Pappy in heaven, which sent Tory dashing into the bathroom where “I cried my eyeballs out. We have all these hopes and dreams for our kids, and then you get hit with a diagnosis like this and wonder, ‘What will it mean for her? Will my baby be in a wheelchair? Will she be able to get a job?’”

诊断后，当时-5岁的玛丽亚开始于类固醇的方案和疾病改性抗风湿药物（DMARD）。类固醇引起了他们的商标“月亮脸”胖乎乎的脸颊，这使得常常玛丽亚说话时令人震惊，让她留下了这么饥饿的是，曾经在半夜发现她的鸡肉睡觉。

但疼痛急剧下降。在大约12周的她的药物方案后，玛丽亚停止服用类固醇，但仍然在她的DMARD上。从她的一些痛苦中解脱出来，玛丽亚和她的家人进入宣传和筹款，由关节炎基金会引导（Tory已联系当地匹兹堡办公室的诊断后指导。）

寻找新的呼叫

2012年，约有20个朋友和家人加入了玛丽亚步行治愈关节炎在团队名称玛丽亚的搬运工下。次年，玛丽亚首先参加了她National Juvenile Arthritis Conference。这是一个游戏更换者。“妈妈，有这么多的孩子就像我一样，”托里召回了她的说法。2016年夏天，贾坎普的社区感继续。

At one point, the Arthritis Foundation encouraged Mariah and her bestie big sister, Mauriauna, to hold an assembly for their middle school to educate students and teachers about JIA. “I felt pretty alone,” Mariah says. “Not a lot of people understood [my condition.] Sometimes I’d bring a walker to school to sit on, and people would ask me questions but not fully understand. I once asked a teacher if I could sit on it while everyone was standing or sitting on the floor. She told me, ‘You’re fine. If you sit down, I’ll need to send you to the nurse’s office.’ But I knew I didn’t need to go to the nurse’s office. So during the assembly, I explained, ‘I’m usually in pain, and you can’t see it.’”

最终，玛丽亚和保守党也创造了玛丽亚的搬运工Facebook页面以连接贾触及的家庭，张贴励志贾相关的新闻，临床试验和调查信息，以及为追随者创建jia意识Facebook个人资料框架，其中它们可以用于他们自己的宣传目的。

Tory说，这种对等倡导点燃了她女儿的火。在“一位战士家庭”的关节炎基础网站上的文章中，“这一运动比她大，这是她对关节炎的力量获得权力的方式。在学校，她是一个积极的领导者，她试图帮助其他孩子......谁有残疾和特殊需求。但在关节炎界，她喜欢和孩子们交谈过来让他们知道其他人在这里知道这是什么样的人。玛丽亚现在拥有一个人的朋友，她自己的年龄有关节炎，但有很多孩子在那里没有。现在他们可以在Facebook上找到她，并知道有人理解他们正在进行的东西。“

A Second Autoimmune Diagnosis and a Disappointing Flare-up

In 2013, Mariah began experiencing stomach pains and nausea after eating. At first, she thought they might be a medication side effect but her rheumatologist ruled that out and sent her to a gastrointestinal doctor, who suggested going dairy-free. When that didn’t help, the doctor mentioned it could be Celiac disease, an autoimmune disease in which the immune system mistakenly attacks the small intestine when foods containing gluten–primarily found in wheat, barley, and rye–are ingested. Based on her bloodwork, Mariah was diagnosed with Celiac and advised to go gluten-free.

It’s thought that about one in four patients with an autoimmune disease will develop an additional autoimmune disease. Tory says the new diagnosis felt defeating initially, and cutting out gluten was difficult for this pasta-loving Italian family. And Mariah experienced an arthritis flare when she first cut out gluten (Tory thinks it was related). But after three to six months, Mariah’s GI issues had abated.

2016年，玛丽亚，毛里圭野，保守党和保守党的妈妈，蒂娜阿基诺队正在参加一年一度的青少年关节炎会议，是他们最喜欢的一年中的活动之一。玛丽亚已经脱掉了5年的类固醇，表现不错。一天晚上，在与家人和朋友一起去吃饭，玛丽亚在她的脚踝中感到痛苦。踝关节痛苦并不一定是她的新现象 - “我偶尔已经过去了，但丁基莴苣含量很好，”她说 - 但这种痛苦似乎在一小时的时间里越来越大。几天后，玛丽亚和朋友们休假，但“很悲惨。我的脖子和肩膀在射箭期间受伤，然后我无法入睡，这对我来说通常是一个耀斑即将来临的标志。“

回到家中，保守党在玛丽亚采取了一个MRI，评估她的关节是否发生了任何永久性损失，并确认她确实在积极的耀斑中。“我记得在一把摇椅上等待，”Tory说，“祈祷我们一直与她的治疗做出正确的决定。”幸运的是，扫描揭示了没有令人担忧的伤害。

尽管如此，耀斑会对玛丽亚的情感健康造成伤害。“当她有一个耀斑时，她没有睡觉，她感到沮丧和超级情感，”Tory说。“而不是抱怨痛苦，她抨击。”超级紧致的母女儿对在一起工作，妈妈不断提醒玛丽亚，“你必须负责自己并为自己倡导。”Tory有时会提供建议：“你痛苦吗？这就是为什么你这样行事？“而且，及时，这可能足以提示一些内在的反射，帮助玛丽亚感到平静。

望向未来

Today, Mariah (nickname: Ri-Ri, rhyming with “Eye-Eye”) is the typical teenager when it comes to lots of things: She’s into hip hop, musical theater, and social media, and will happily snooze past noon any chance she gets. Her pain is well-managed and while she still gets sore from time to time, “It’s not bad,” she says. Mariah also spends lots of time with Grandma Tina, a.k.a. Nunny.

他们一起花园（向日葵，草莓和蓝莓是在夏天的2020花园里）和尼姑娘的热爱植物的热爱激发了Mariah在大学里的学习植物学。Nunny还恰好与关节炎一起生活，只在她的情况下，它是与年龄相关的骨关节炎。即使这两种形式的疾病都是不同的（玛丽亚是自身免疫;她的祖母不是），他们仍然粘在其中。“我们会在它上笑话，”玛丽亚说。“我会告诉她，'这都是你的错。'”

在Covid期间的生活在大多数时候都看到了新的高中新生住所;因为她的免疫系统受到贾氏症，所以捕获新型病毒的赌注甚至更高。“当我生病时，我会得到超级病，它待了几周，”她说。玛丽亚已经能够看到她最好的朋友Zoey，谁是“不去任何地方。我们是一个豆荚。我们喝咖啡，闲逛，跳舞。她没有贾，但她随时听，我有糟糕的一天，她会过来的，坐在我的床上，让我笑。“

然后有最好的朋友，她分享了那个房间的毛里亚纳。“我们是不可分割的，”玛丽亚说。他们一起唱一起，玩尤克里莱，绘画，并将Tik唱片和制作Tik Tok视频一起，互相偷走衣服（15，Mauriauna只有一年的岁月）。Big Sis还参加了众多贾议会，帮助筹款，甚至偶尔拍摄了她的小SIS射击。即使“我有时会感到遗漏，就像很多关注她，我现在不介意它。”，Mauriauna说。“我看到她与人分享她的故事。这是一个令人振奋的看见她生长了多少。“

至于保守党，这位专业的助听器钳工从未以为她有一天成为贾父的父母倡导者，但角色很适合她很好。早期，她发现她的内部妈妈熊在玛丽亚被不公平对待的情况下，就像那位拒绝让她在课堂上休息的老师一样。(“We had kind words with that teacher. I said, ‘I’m certain you forgot, I’m certain you didn’t mean anything by it, but this is how you made my child feel.”) And when she and Mariah are invited to speak on-camera for various news stations, her desire to educate the public shines through.

During a July 2017 Juvenile Arthritis Awareness Month segment for CBS Pittsburgh, she managed to weave in several key talking points, including a succinct explanation of JIA (“[Mariah’s] immune system doesn’t know what to attack, so as opposed to attacking foreign invaders, it attacks her joints”); some surprising statistics (“Rheumatic diseases are more prevalent than muscular dystrophy, cystic fibrosis, and juvenile diabetes combined; there’s more than 300,000 kids in United States with arthritis”); and the important note that JA is “not the same as your grandpa’s arthritis,” meaning it’s not a gradual wearing out of one’s joints.

她最喜欢的事情：看玛丽亚只是一个少年。“当我看到她蓬勃发展时，它会给我带来快乐。我们真的享受大多数人理所当然的事情。我们只是以不同的方式看待生活。我们认为自己真的很幸运，因为我们知道治疗失败的人。“

For now, much of Mariah’s family’s advocacy work is going virtual. Mariah’s Movers Carnival, the family’s annual fundraising carnival featuring kid-friendly activities like pony rides, bounce houses, arts and crafts, and live music, is on hold, but they were able to raise $4,000 in donations this summer through friends and family, bringing them to more than $30,000 in total over the years. (Other advocacy highlights have included being named the 2012 Pittsburgh Walk to Cure Arthritis youth honoree and the 2017 national Walk to Cure Arthritis youth honoree; Mariah has also traveled to Harrisburg, PA, and Washington, D.C., each year since 2015 to advocate for improved access to care for people with arthritis.) And they’ll keep plugging away, because Tory and Mariah both know all too well what it feels like to be “in that dark tunnel after a diagnosis, looking for the light. The pain is not going to last forever, and that’s what I tell other moms we meet through Mariah’s Facebook page and at JA conferences.”

接下来的地平线：玛丽亚最初是第一次成为一个大姐姐;Tory是由于10月份提供了一个女婴。

在玛丽亚最近14岁生日的Facebook帖子中，Tory叫她“我的战士公主......我的鞭炮......我所知道的最勇敢，最强的孩子之一。她是善良而凶悍的。Sassy但甜蜜。顽固而关心。她可以保护她的爱是所有费用。并倡导正确的东西。她并不害怕站起来为她所信仰的东西而战。我不能等待你的未来。“