一个患有罕见巴滕病的英国幼儿在10岁前就会死亡,并接受由慈善机构资助的昂贵的脑灌注。 A UK toddler with rare Batten disease faces death before age 10 and receives costly brain infusions funded by charity.

在联合王国Dorset,一名3岁女孩被诊断患有Batten病,这是罕见的致命遗传疾病,只影响到联合王国约40名儿童,预计其寿命不会超过10岁。 A three-year-old girl in Dorset, UK, diagnosed with Batten disease, a rare fatal genetic disorder affecting only about 40 children in the UK, is expected to live no longer than age 10. 她的母亲Stacey Sprason说,在突然查获和住院后,诊断是毁灭性的,Teraysa面临视力、行动能力、言语能力和饮食能力的逐渐丧失。 Her mother, Stacey Sprason, said the diagnosis, following a sudden seizure and hospitalization, was devastating, with Teraysa facing progressive loss of vision, mobility, speech, and ability to eat. 儿童每两周接受昂贵的、维持生命的酶注入大脑一次,费用每年500 000英镑,由慈善机构资助。 The child undergoes expensive, life-sustaining enzyme infusions into her brain every two weeks, costing £500,000 annually and funded by charity. 该家庭正在筹集资金,用于治疗旅行和前往迪斯尼乐园的旅行,同时应对持续发作和情绪紧张。 The family is raising money for treatment travel and a trip to Disneyland, while coping with ongoing seizures and emotional strain.