5岁【秦俊凯】患1~10100万罕见病·慢性活动性EB病毒感染！盼助

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5岁【秦俊凯】患1~10100万罕见病·慢性活动性EB病毒感染！移植是唯一希望，借您一束光，盼助

求助人的故事

您好！我叫秦沛亮，我们来自甘肃省庆阳市镇原县一个普通的农村家庭。今天，我怀着无比沉重的心情，为我5岁的儿子秦俊凯写下这封求助信。

一、病魔突袭，孩子命悬一线

2025年3月2号，原本活泼可爱的儿子突然开始持续高烧，起初，我们以为只是普通的感冒或支原体感染，在家吃了退烧药和消炎药，但病情丝毫没有缓解。随后，我们带孩子到当地医院检查，血常规没有任何异常，医生怀疑是腺病毒感染，输液三天后一直不见好转，转到西安市儿童医院住院，怀疑是EB病毒感染，立即住院，期间发现脾脏肿大，血常规数值异常，医生安排骨髓穿刺，孩子还是高烧不退，每天昏昏沉沉地睡着，醒来就哭着喊“爸爸，我头疼，我难受……”看着他苍白的小脸，我的心像被刀割一样疼，他才5岁啊，本该在阳光下奔跑、在教室里读书，如今却被病魔折磨得奄奄一息，等待结果的那四天，是我人生中最煎熬的一段时间。结果被确诊为：噬血细胞综合征,EB病毒性肝炎,EB病毒性单核细胞增多症,腺病毒感染,心肌损害，3月28号号转到上海儿童医学中心，还是相同结果，慢性活动性eb病毒感染，医生说“唯一治愈希望的就是骨髓移植......”

二、确诊罕见病，天塌了
薄薄的检查单，拿在手里却重如千斤，我的眼泪止不住地往下掉，整个人瘫软在地，无法接受这个残酷的现实。医生告诉我们，嗜血细胞综合征发病率仅为1~10/100万，5万个活产婴儿中1人发病，5岁的孩子更为罕见，这是是一种恶性程度极高的血液病，起病急、进展快，未来可能会出现严重贫血、高热和出血倾向，如果不及时治疗，随时可能危及生命！目前，孩子需要立即进行高强度化疗（地塞米松加卢克替你），以抑制癌细胞的疯狂增殖，同时还要用大量抗生素对抗感染，并配合输血、营养支持等治疗。如果化疗效果不理想，后续可能需要进行造血干熊移植，而移植费用至少需要50万元！

三、贫困家庭，无力承担天价医疗费
我们只是一个普通的打工家庭，和妻子都没有稳定的收入来源，要养两个孩子，生活本就捉襟见肘。儿子生病后，光是前期的检查和治疗就已经花光了10万，用尽了家里所有的积蓄，还向亲戚朋友借了好几万。如今，面对后续高昂的化疗和可能的移植费用，我们真的走投无路了……万般无奈只好发起水滴筹。

四【感恩感谢】

尽管我有一万个不愿意麻烦大家，只是这次，对于一个贫苦的家庭来说，对抗病魔医疗费用实在是一座无法逾越的大山，哪怕是希望就在前方可我们却举步维艰！ 我知道大家的每一分钱都来之不易，也知道任何言语上的感激都很苍白，但我还是希望大家帮我们转发和证实，争取为我孩子筹得多一些爱心和善款，让后续能得以治疗！感恩所有的好心人，希望你们能一生平安、幸福！恳请各位好心人士伸手相助！感恩！

再次感谢各位爱心人士的无私帮助！
 
祝大家身体健康，家庭幸福！

 

爱心捐助链接；   https://www.shuidichou.com/cf/contribute/02601aab-e198-40e9-815a-bc3d37712aeb?sharedv=0&userSourceId=VzCx9l%2FdtPuT49xg7cBKzA%3D%3D&shareId=6dc565564a824e2ca0883782becf93a1&forwardFrom=5

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