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，妻子和我給5周大的女兒停止了維持生命的治療。到目前為止，那是我們生活中最艱難、最痛苦的決定。我們的女兒Alle Shea出生時(shí)就患有罕見(jiàn)的骨骼疾病——成骨不全癥。出生時(shí)，Alle Shea的頭蓋骨在X光片上看起來(lái)就像有裂紋的雞蛋，胳膊、肋骨、腿和手腕多處骨折。Alle離開我們的那天，我們用醫(yī)院擔(dān)架把她帶出了醫(yī)院，把她抱在懷里直到她去世。
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.
那天我們有兩個(gè)選擇：要么被悲傷擊倒，要么把傷痛化為動(dòng)力。從那天起，妻子和我不知疲倦地利用所有時(shí)間舉辦特殊活動(dòng)，和學(xué)生、媒體聊成骨不全癥的話題。我們甚至聯(lián)系醫(yī)院，想讓他們也加入我們，我們現(xiàn)在仍然在為此努力。過(guò)去的七年中，我們做了數(shù)千小時(shí)的志愿活動(dòng)。2015年二月，我們啟動(dòng)了OI Care for You這個(gè)項(xiàng)目。我們把毛絨玩具送給在醫(yī)院治療、做手術(shù)或骨折在家休養(yǎng)的患成骨不全癥的孩子們。
Each one brings a smile and comfort to a child with Osteogenesis Imperfecta (OI).
每個(gè)玩具都帶給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.
來(lái)自附近城市和城鎮(zhèn)的家庭都來(lái)感激我們的所作所為，感謝我們給了他們家里成骨不全癥患者一種特殊的支持。