青春励志英语美文摘抄 双语美文：那个玻璃一般珍贵的宝宝 留给世界最好的礼物

双语美文：那个玻璃一般珍贵的宝宝 留给世界最好的礼物  

Nine years ago,,九年前,my wife and I lost our first daughter,,我和妻子失去了我们第一个女儿,Alle Shea Collazo,,她的名字是Alle Shea Collazo,to the rare bone disease Osteogenesis Imperfecta (OI).,死于一种名叫成骨不全症的罕见骨科疾病,At birth,,刚出生时,Alle had broken ribs ,,Alle肋骨上多处骨折,arm, legs, wrist and her skull had many fractures.,手臂，腿骨和头骨也有骨裂,Alle graced their lives for only five weeks.,Alle仅仅活了5周，却让身边的人生活有了光彩,The day she passed away,她离开的那一天,it was the first time,是第一次,we got to hold Alle,我们可以亲身抱着Alle,without pillows and cushions beeen us.,彼此之间没有枕头和软垫的阻隔,We promised,我们许诺,to keep Alle Shea's fight alive,要让Alle Shea反抗命运的精神一直持续下去,by being advocates for OI,我们成为了成骨不全症的宣传志愿者,- raising awareness,提高人们的防范意识,and much-needed funds,筹募资金,for the OI Foundation based in Maryland.,马里兰州的成骨不全症基地亟需这笔基金,We have no big corporation sponsors,我们没有大财团的资助,and little to no budget;,预算款少到几乎没有,we finance everything on their own.,一切进出项都靠自己筹措,We host many fundraising/awareness events,,我们举办了许多旨在筹募资金或提高意识的活动,the latest event will be a edy show,最近的一场活动是一台喜剧秀,in the next few months,,它将会在几个月之内上演,all the money raised in memory of Alle Shea,所有的善款都以纪念Alle Shea的名义筹集,goes to aid in research,将用于这种疾病的研究,and to grants to help people living with OI.,也会拨款以帮助那些还活着的成骨不全症患者,Every year on Alle’s birthday,每年到了Alle的生日,we have a special event.,我们都要举行一场特殊的集会,OI will appear with equal frequency among males, females,成骨不全症发生在男性和女性人羣中的概率是一样的,and among racial and ethnic groups,,对不同种族和信仰者亦是如此,it occurs in approximately 1 in 20,000 births,每2万个新出生的婴儿中就约有1个病例,that is a 0.005% chance of having an OI baby.,也就是说，生下一个成骨不全症婴儿的概率是0.005%,Many children with OI,患有成骨不全症的儿童,experience broken bones,,会发生骨折,surgeries and hospital stay,,经历大手术，住院,multiple times a year,,一年数次,which can be scary.,这会是十分可怕的经历