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来自患有严重慢性疾病儿童的父母的家庭故事

如果说养育一个健康的孩子需要整个村庄的力量，那么养育一个特殊儿童又需要付出怎样的努力呢？2016年，露西尔·帕卡德儿童健康基金会委托普利策奖得主、摄影师迪安娜·菲茨莫里斯进行调查。迪安娜跟踪拍摄了加州各地10个家庭——从乡村农场到大型城市中心，再到硅谷郊区——这些家庭日夜照顾着他们的特殊儿童。这些家庭的故事被制作成巡回展览，可在各种活动或场所展出。请联系我们。 info@exhibitenvoy.org.

Young Asian mom holding up the care map for her sons with special health care needs.

认识一下来自加利福尼亚州阿拉米达县的斯蒂芬和爱德华。斯蒂芬和爱德华患有亨特综合征。

A mom and her adult son with special health care needs hold up a copy of his care map.

认识一下来自加州辛格尔顿的德里克德里克患有脊柱裂、脑积水、神经源性肠道和膀胱功能障碍以及双侧马蹄内翻足。

A girl with special health care needs wearing a hijab is seated in her wheelchair outside her home in a rural California town. She and her mother and stepfather are holding her care map.

认识一下来自加州邓拉普的萨维特里萨维特里患有脑瘫、发育迟缓、癫痫和痉挛性四肢瘫痪。

A young boy with special health care needs and his mother hold up his care map.

认识一下埃文，他住在加利福尼亚州比尔空军基地。埃文患有神经纤维瘤病，包括身体发育迟缓和语言发育迟缓。

A young girl with Down syndrome and other special health care needs and her mother hold up a copy of her care map.

认识一下来自加州圣马科斯的伊莎贝拉。伊莎贝拉患有唐氏综合征、发育迟缓和心脏缺陷。

A boy with special health care needs sits on his father's lap, while his mother, seated next to him, holds up his care map.

认识一下来自加利福尼亚州安大略市的丹尼尔。丹尼尔患有神经纤维瘤病。

Twin girls with special health care needs are held by their parents while standing next to their grandfather. They are outside, next to a fence, their faces reflecting the sunset. The girls are holding a copy of their care map.

认识一下来自加州玛丽斯维尔的塞莱斯特和阿莱克西娅。Celeste 和 Alexia 患有 22q 缺失综合征。

Young brothers with special health care needs stand on either side of their mother while she holds a copy of their care map.

认识一下来自加州格拉斯谷的埃米特和科恩。埃米特和科恩都患有1型糖尿病。

A young girl with special health care needs and her mother hold up a copy of her care map. There is an adult man also standing with them.

认识一下来自加州弗雷斯诺的凯瑟琳凯瑟琳患有脑积水、脑瘫、脑室周围白质软化症、胼胝体发育不全和皮质性视觉障碍。

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