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).
死于一種名叫成骨不全癥的罕見骨科疾病

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
我們可以親身抱著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(xù)下去

by becoming advocates for OI
我們成為了成骨不全癥的宣傳志愿者

- raising awareness
提高人們的防范意識

and much-needed funds
籌募資金

for the OI Foundation based in Maryland.
馬里蘭州的成骨不全癥基地亟需這筆基金

We have no big corporation sponsors
我們沒有大財團的資助

and little to no budget;
預(yù)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(nèi)上演

all the money raised in memory of Alle Shea
所有的善款都以紀念A(yù)lle Shea的名義籌集

goes to aid in research
將用于這種疾病的研究

and to grants to help people living with OI.
也會撥款以幫助那些還活著的成骨不全癥患者

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
成骨不全癥發(fā)生在男性和女性人群中的概率是一樣的

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，生下一個成骨不全癥嬰兒的概率是0.005%

Many children with OI
患有成骨不全癥的兒童

experience broken bones,
會發(fā)生骨折

surgeries and hospital stay,
經(jīng)歷大手術(shù)，住院

multiple times a year,
一年數(shù)次

which can be scary.
這會是十分可怕的經(jīng)歷