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 between 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 becoming 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 comedy 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群中的概率是一样的

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