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Seven years ago, my wife and I had to take our five week old daughter off of life support, by far the hardest and most painful decision of our life. Our daughter, Alle Shea, was born with the rare bone disease called Osteogenesis Imperfecta. At birth Alle Shea’s skull looked like a cracked egg on the x-rays. She also had multiple fractures in her arms and her ribs, her legs, and her wrist. The day Alle was leaving us, we were able to take her outside on the hospital deck and hold her in our arms until she passed away.7年前，妻子和我给5周大的女儿停止了维持生命的治疗。到目前为止，那是我们生活中最艰难、最痛苦的决定。我们的女儿Alle Shea出生时就患有罕见的骨骼疾病——成骨不全症。出生时，Alle Shea的头盖骨在X光片上看起来就像有裂纹的鸡蛋，胳膊、肋骨、腿和手腕多处骨折。Alle离开我们的那天，我们用医院担架把她带出了医院，把她抱在怀里直到她去世。
Now, we had two choices that day: we could have let the grief over take us, or we could take that grief and turn it into a positive. Since that day, my wife and I have worked tirelessly volunteering our time hosting special events, and talking to students and the media about OI. We even contacted hospitals to try to get them on board with our cause - and this is the battle we are still fighting. Over the seven years, we have volunteered thousands of hours. February of 2015 we started OI Care for You program. We send stuffed animals to children with OI in the hospital for treatment, surgery or home recovering from a break.那天我们有两个选择：要么被悲伤击倒，要么把伤痛化为动力。从那天起，妻子和我不知疲倦地利用所有时间举办特殊活动，和学生、媒体聊成骨不全症的话题。我们甚至联系医院，想让他们也加入我们，我们现在仍然在为此努力。过去的七年中，我们做了数千小时的志愿活动。2015年二月，我们启动了OI Care for You这个项目。我们把毛绒玩具送给在医院治疗、做手术或骨折在家休养的患成骨不全症的孩子们。
Each one brings a smile and comfort to a child with Osteogenesis Imperfecta (OI).每个玩具都带给患病孩子微笑和安慰。
We had OI families come from neighboring cities and towns and thank us for doing what we do and giving them another way to show support for a family member with OI.来自附近城市和城镇的家庭都来感激我们的所作所为，感谢我们给了他们家里成骨不全症患者一种特殊的支持。
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发表于 2016-11-30 09:04:43