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我的儿子罗南看着我,并且扬起了一边的眉毛。他的双眼明亮有神。“罗南”在爱尔兰语里是“小海豹”的意思,这名字很适合他。我不想再写下去了,不想谈到那可怕的结局:我的儿子现在18个月大,他很可能活不到三岁。罗南生下来就有泰—萨克斯症——一种罕见的基因缺陷。他会逐渐退化成
My son Ronan looked at me and raised one eyebrow. His eyes are bright and godly. “Ronan ” in Irish is “baby seal ” meaning, the name is suitable for him. I do not want to write it anymore. I do not want to talk about the terrible ending: my son is now 18 months old and he probably will not be able to live until he is three years old. Ronan is born with Thai-Sachs disease - a rare genetic defect. He will gradually degenerate into