Osteogenesis Imperfecta

‘The doctor had tears in her eyes. ‘We can’t say if he’ll make it or not.’ Fractures started appearing in the scans, in every limb.’: Woman births baby with Brittle Bone Disease, ‘My job is to love him well’

“At our 20-week ultrasound, we received the news our son’s femurs looked short, in addition to smaller arms. The kicker was he wasn’t fitting any specific mold. ‘We can’t say definitively if he’ll make it or not.’ I leaned on my faith more than ever.”

‘Legs are bowed. All bones, bowed. Extremely short.’ I felt my heart sink. ‘I don’t see the point in continuing. You can end it now, quickly.’: Family cherishes 29 hours with Osteogenesis Imperfecta warrior

“‘Let me see her eyes. Please please, let Maverick meet her alive.’ Before I knew it, I heard, ‘Happy Birthday!’ Huh? She’s here? Why don’t I hear crying? I couldn’t see anything beside the ceiling, doctors moving around. ‘Is she breathing? Is she?’ Tears were flowing from my eyes. She smiled at her brother and her daddy. She waited until we got one more kiss.”

‘She was in her bouncer when I heard, ‘CRACK!’ A voice in my head said, ‘Take her, NOW.’ There was more to the story than I knew.’: Baby diagnosed with Brittle Bone Disease, ‘She’s our little fighter’

“It was a Friday afternoon when I got the call. Athena and I were picking out Build-A-Bears. ‘How was this missed?!’ At the ER, the doctor asked, ‘How did this happen? Who took care of her?’ He was checking to see if we had purposely abused her. ‘We need to verify if DHR needs to be involved.’ It broke my heart all over again. They checked for more bruising. I was terrified of losing her.”

‘We were given a pamphlet. Everything said ‘lethal’. My boy had other plans.’: Baby with Osteogenesis Imperfecta ‘makes his own rules,’ defies all medical odds

“I didn’t learn anything was wrong with my son until 2 weeks before I had him. It went from ‘something might be wrong with his foot’ to ‘he is completely incompatible with life’. We waited for the genetic results to come back knowing every hour could be his last. All I could think was, ‘This can’t be his story.’ He’s a warrior.”

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