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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。 | 
