rare disorder

‘We walked through the door. His first word was, ‘DADDY!’ He lived his whole life in foster care. Weeks later, we found out we were pregnant!’: Bereaved mom adopts boy from foster care, births 3 sons

“The social worker asked, ‘What ethnicities are you open to?’ We sent Jonah a video of us, a stuffed animal, and a security blanket with our scent so it would be familiar. Every night, he slept with the stuffed animal and blanket. He watched our video, over and over and over again. We just ‘knew’ he was meant to be ours!”

‘The monitor went crazy. Suddenly, there was a half dozen doctors in the room, bagging my son. ‘I’m going to watch him die, aren’t I?’: Boy diagnosed with rare Sturge-Weber Syndrome, ‘A birthmark changed our life’

“He was hitting his milestones. He was happy. He was supposed to beat the odds. One evening, we noticed he wasn’t himself. He wasn’t making eye contact and was whimpering non-stop. We thought it was the heat, so we gave him a cool bath and went to sleep. The next morning, his face turned blue before my eyes. He went limp. The ambulance came and took Noah away. I couldn’t believe it. My baby wasn’t my baby anymore. Watching him fight made me so strong. For him. For us.”

‘He is 1 in 6 billion.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’

“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”

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