12岁的孩子正在执行一项任务，以消除川崎病

Aubrey Virgin was a healthy, active 2-year-old when she developed a high fever.

接着，皮疹迅速蔓延到她的全身. 她脖子上的淋巴结肿胀了. 她的嘴唇、手和脚也是如此. 当她的母亲香农抚摸她时，奥布里哭了.

Shannon rushed Aubrey to a pediatrician near their home at the time in Anchorage, Alaska. 医生立即怀疑是川崎病, the most common cause of children's heart disease that is not a congenital heart defect.

因为它与许多其他儿童疾病相似, 比如麻疹和猩红热, misdiagnosis is common. Left untreated, it has potential life-threatening consequences – 20% to 25% of children develop coronary artery aneurysms, 向心脏供血的动脉中的凸起.

The doctor sent Aubrey to a pediatric cardiologist and arranged a hospital room.

奥布里的血检显示高度炎症. 传染病医生, 之前在川崎病诊所工作的人, 进来看了一眼奥布里，确认是川崎.

奥布里出现症状后48小时内, 她接受了免疫球蛋白静脉注射, 由静脉注射的抗体制成的产品. 这药很快使她退烧了.

Shannon and her husband, Kyle, 轮流照顾奥布里和另一个女儿, 9-month-old Kyleah. 在医院住了将近两周之后, Aubrey finally was discharged with a six-month prescription for oral steroids. Every few months, 奥布里偶尔会发烧和发炎, 包括奇怪的地方，比如她的嘴唇.

每一集都让香农担心. She found comfort by delving into research and connecting with other families.

"I found the Kawasaki Disease Foundation and joined Facebook groups," Shannon said. "Several parents whose kids had had Kawasaki commented that things kept popping up with their children afterward as well."

尽管偶尔会爆发，奥布里还是茁壮成长. 她喜欢阅读和活跃. 她5岁时开始踢足球，很快就表现出色.

At 6, 她参加了她的第一次阿拉斯加心脏跑, 为美国心脏协会筹款. 她奋力跑完5公里. 第二天，她的膝盖疼得几乎不能走路. 医生在x光片上没有发现什么，但奥布里的血液检查显示有炎症. Eventually a pediatric rheumatologist diagnosed her with juvenile inflammatory arthritis – and suspected she also may have a more serious condition.

For two years, Aubrey continued to have flare-ups of pain, inflammation and fever spikes. Doctors told Shannon to start a binder that included every episode, with photos. 随着线上电子游戏飞禽走兽的推移，它变得越来越厚.

Shannon and Kyle had to fly Aubrey to Seattle every three months to see a specialist. 香农辞去了她的工作来监督奥布里的医疗需求.

When Aubrey was 8, doctors diagnosed her with a rare systemic autoinflammatory disease called tumor necrosis factor receptor-associated periodic syndrome, or TRAPS. It's hereditary, and testing confirmed Kyleah also has it, though her symptoms are milder. TRAPS is characterized by periodic episodes of fever as well as muscle and abdominal pain, headaches and skin rashes. 奥布里还被诊断出患有广泛性焦虑症.

Now 12, Aubrey is doing well, in part thanks to regular medication that suppresses her immune system. 这家人现在住在安克雷奇东北一小时车程的地方, in Palmer, 奥布里继续看儿科医生, rheumatologist, 免疫学家和心脏病专家.

"My research into Kawasaki disease has led me to believe that it set Aubrey's immune system into overdrive, 从那以后就不一样了," said Shannon. “因为我们对这种疾病及其长期影响知之甚少, 奥布里继续接受后续治疗很重要, 健康饮食，保持活跃."

奥布里仍然有痛苦的发作, and the family has been even more diligent about her health since the arrival of COVID-19.

"We toe the line between keeping her safe, but also emotionally and mentally happy," Shannon said. “她充满冒险精神，运动能力很强."

Aubrey's first Alaska Heart Run didn't deter her from returning with a team called Kickin' Kawasaki Disease. 直到去年这个活动变成了虚拟的, 她是五年来个人筹款最多的人, raising more than $17,000.

Aubrey also is a straight-A student, runs track and field and cross-country, and excels at soccer.

她的疼痛终于减轻了.

她说:“药物治疗很有帮助，我感觉不那么疼了。. “药物唯一不能帮助的是精神挑战. 有时我会被事情压垮，但我正在学习如何控制它."

Over the summer, Aubrey ran the grueling Mount Marathon, a 5K race with a 3,000-foot elevation gain. 她进入了青少年(包括17岁以下的女孩)的前10名.

“真是令人振奋，”她说. “跑步感觉很自然，很有趣."

Aubrey, who also is a skilled hunter, hopes to work in wildlife conservation.

“我喜欢了解自然界的一切."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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