分享人生故事，遇見(jiàn)悲傷，創(chuàng)造美好！

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.
 
七年前，我和妻子停止了對(duì)五周大女兒的生命治療。到目前為止，這是我們生活中最艱難、最痛苦的決定。我們的女兒Alle Shea出生就有罕見(jiàn)的骨髓疾病稱為成骨不全癥。在出生時(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。當(dāng)她離開(kāi)了我們，我們把她從醫(yī)院用擔(dān)架帶出，把她抱在懷里，直到她離去。
 
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.
 
那一天，我們有兩種選擇：要么被悲傷擊倒，要么變痛苦為動(dòng)力。從那一天起，我和我的妻子一直不知疲倦地用我們所有的時(shí)間舉行特別活動(dòng)，和學(xué)生、媒體聊成骨不全癥的話題。我們甚至聯(lián)系了醫(yī)院，希望他們能加入我們，我們還在努力中。在過(guò)去的七年中，我們志愿服務(wù)了數(shù)千小時(shí)。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)自附近城鎮(zhèn)的家庭開(kāi)始感謝我們所做的一切，并感謝我們?yōu)樗麄兊募彝ヌ峁┝艘环N特殊的支持。
 
致努力行動(dòng)創(chuàng)造美好的人！