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无药可治,2岁巴顿病患儿离世

发布时间:2025-01-06

来源:大学网站

Two-year-old Mirryn Cunningham has died in the UK after struggling with a rare form of childhood dementia.

英国两岁的米莉·坎宁安,死于一种罕见的儿童痴呆症。

"No pain any more.

No medication.

No drips.

No oxygen.

Just Mirryn," mum Vicky told the BBC.

不再痛了,没有药物,没有输液,没有氧气罩,只有米莉。

”妈妈维姬接受BBC采访时表示。

The illness, known as Batten disease, meant she could not see or walk properly, nor eat food on her own.

这种疾病被称为巴顿病,意味着她看不见或不能正常行走,也不能独自进食。

"She fought hard for a long time now," Vicky said.

维姬说:她努力奋斗了很长一段时间。

”There is no cure for Batten disease, the BBC reports, and only about six children in the UK are born with it every year.

据英国广播公司报道,目前还没有治愈巴顿病的方法,英国每年只有大约6名新生儿患有巴顿病。

Mirryn spent the last two months of her life at the Children's Hospice Association of Scotland, where she died on Sunday (local time).

米莉生命的最后两个月是在苏格兰儿童临终关怀协会度过的,她于当地时间周日去世。

"She was getting her favourite story and she was being cuddled by mum and she just put her head on me and she took her last breath," Vicky told the BBC.

"A big massive breath and that was her.

"她正在听她最喜欢的故事,我抱着她,她把头靠在我身上,奄奄一息,”维姬说,长长的呼吸后,她走了。

”Vicky described her daughter as "miracle Mirryn".

维姬称她的女儿为奇迹米莉”。

"She fought hard and she earned her name miracle, she passed away in the most loving way with her family around her," a Facebook post on the page 'Team Miracle Mirryn' says.

她努力奋斗,像自己的名字一样奇迹,她在家人的陪伴下以最慈爱的方式离开了人世,”奇迹团队”在Facebook上发表了这样的文章。

According to the National Institute of Neurological Disorders and Stroke website, children with Batten disease often appear healthy and develop normally before they begin to show symptoms.

根据国家神经疾病和中风研究所网站的介绍,患有这种疾病的儿童在症状开始出现之前看起来非常地健康,并且发育也十分正常"Common symptoms for most of the forms include vision loss, seizures, delay and eventual loss of skills previously acquired, dementia, and abnormal movements.

"最常见的症状包括视力丧失,癫痫,先前获得的技能的逐渐丧失,痴呆,以及运动异常。

The website says children may develop personality and behaviour changes.

随着疾病的进展,孩子们可能会出现一种或多种症状,包括性格和行为的改变"Over time, affected children may suffer from worsening seizures and progressive loss of language, speech, intellectual abilities (dementia) and motor skills.

"随着时间的推移,受影响的儿童可能会遭受癫痫发作的恶化,以及语言,说话,智力和运动技能的逐渐丧失。

【无药可治,2岁巴顿病患儿离世查看网站:[db:时间]】

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