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本故事根据真实人物事件改编
自毁容貌综合征(简称LNS)。是一种罕见的遗传代谢病。发病率仅为1/38万。当柒柒(本文聪聪的原型)的父母得知孩子患有该病时,感觉天都塌下来了,他们寻找国际权威专家也没有治愈的办法。为了防止孩子自残,只能拔掉门牙。即便如此,柒柒还是咬破了自己的牙肉。为了让有更多的人能了解此病,让社会引起关注。母亲创办了“蚕宝儿LNS关爱之家”的患者互助组织。如今成员已达到54个患者家庭,且有近20位确诊过此病的专家医生。柒柒的父亲希望组织内患者家庭可达到100人,这样柒柒就有希望等到基因公司或者医疗机构找到LNS的根治方式。
#头条创作挑战赛#