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789
坎宁安的女儿米莲患“儿童脑退化症”。
每位妈妈都希望悉心栽培孩子,看着他们一天天茁壮成长,但苏格兰一位妈妈却只能亲眼看着女儿一步步退化,将学过的技能一一淡忘,最后连吞咽、呼吸的能力都失去,她痛心地形容“疾病逐点逐点带走我的女儿”。
苏格兰西洛锡安一名只有两岁的女童米莲患上罕见隐性遗传病“贝敦氏症”,一般俗称为“儿童脑退化症”,患者神经系统逐渐受破坏,身体慢慢衰退,暂时并没有方法治疗。米莲妈妈坎宁安指,在米莲大约10个月大时,发现她有不妥,因为她不再握住她的手或玩具,也不懂得握住拳头,原来她已出现肌肉衰退。
经检查后,医生发现米莲脑内的髓鞘缩减,即失去一种保护神经线的脂肪物质,随后米莲的病情快速恶化,她不再在婴儿篮上摇动,甚至不再发出学说话的声音。
终于米莲在1岁时确诊患上“贝敦氏症”,此为一系列影响神经的疾病,全球约10万人中有一名患者。根据按病变基因的分类,米莲的状况属于“CLN1”,即1型神经元类蜡脂褐质病变,有记录的案例只有约200个。医生坦白告知坎宁安,此类患者约18个月大开始病发,脑细胞慢慢死去,日子所剩无几。资料指,儿童患者约在2岁会出现癫痫,而且会慢慢失明,到3岁会失去活动能力,过不到童年。
坎宁安指,女儿米莲是一名只有31周零2天就出生的早产婴,诞生时只有3磅2安士,要入住特别病房2个月治疗肝脏的问题,但见米莲出院后,渐渐长大,她本以为再也不用为其健康担忧,谁料她竟有绝症,“就像一个患了脑退化症的老人家,她最后会停止呼吸”,坎宁安指︰“看着这一切会心碎,她原本应该开始上幼儿园,但我知不会有这一天,她将失去很多机会。”
苍天残忍,噩耗还陆续有来,坎宁安的8岁儿子也被诊断出脑部有异常,她在众筹网站上发起运动,希望筹到足够经费购买一张辅助椅“P Pod”,希望令米莲可安乐地过余下的日子。
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