雙語美文：那個玻璃一般珍貴的寶寶 留給世界最好的禮物
Nine years ago,
九年前
my wife and I lost our first daughter,
我和妻子失去了我們第一個女兒
Alle Shea Collazo,
她的名字是Alle Shea Collazo
to the rare bone disease Osteogenesis Imperfecta (OI).
死於一種名叫成骨不全症的罕見骨科疾病
At birth,
剛出生時
Alle had broken ribs ,
Alle肋骨上多處骨折
arm, legs, wrist and her skull had many fractures.
手臂，腿骨和頭骨也有骨裂
Alle graced their lives for only five weeks.
Alle僅僅活了5周，卻讓身邊的人生活有了光彩
The day she passed away
她離開的那一天
it was the first time
是第一次
we got to hold Alle
我們可以親身抱着Alle
without pillows and cushions between us.
彼此之間沒有枕頭和軟墊的阻隔
We promised
我們許諾
to keep Alle Shea's fight alive
要讓Alle Shea反抗命運的精神一直持續下去
by becoming advocates for OI
我們成爲了成骨不全症的宣傳志願者
- raising awareness
提高人們的防範意識
and much-needed funds
籌募資金
for the OI Foundation based in Maryland.
馬裏蘭州的成骨不全症基地亟需這筆基金
We have no big corporation sponsors
我們沒有大財團的資助
and little to no budget;
預算款少到幾乎沒有
we finance everything on their own.
一切進出項都靠自己籌措
We host many fundraising/awareness events,
我們舉辦了許多旨在籌募資金或提高意識的活動
the latest event will be a comedy show
最近的一場活動是一臺喜劇秀
in the next few months,
它將會在幾個月之內上演
all the money raised in memory of Alle Shea
所有的善款都以紀念Alle Shea的名義籌集
goes to aid in research
將用於這種疾病的研究
and to grants to help people living with OI.
也會撥款以幫助那些還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.
我們都要舉行一場特殊的集會
OI will appear with equal frequency among males, females
成骨不全症發生在男性和女性人羣中的概率是一樣的
and among racial and ethnic groups,
對不同種族和信仰者亦是如此
it occurs in approximately 1 in 20,000 births
每2萬個新出生的嬰兒中就約有1個病例
that is a 0.005% chance of having an OI baby.
也就是說，生下一個成骨不全症嬰兒的概率是0.005%
Many children with OI
患有成骨不全症的兒童
experience broken bones,
會發生骨折
surgeries and hospital stay,
經歷大手術，住院
multiple times a year,
一年數次
which can be scary.
這會是十分可怕的經歷
