neurological disorder

‘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.”

‘Penny is nonverbal, but please don’t make her a prop. She is not your ‘disabled best friend.’: Dad touched after stranger’s rare ‘act of empathy’ for daughter with Aicardi syndrome, ‘the world needs more people like her’

“I’ve experienced too many instances of people taking selfies with Penny and posting them all over social media. Penny is not your ‘Disabled Best Friend,’ or a chapter in your Facebook Story. Please don’t exploit a non-existent relationship with a disabled child in a wheelchair to demonstrate to your friends and family how wonderful you are. She just wants to belong.”

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