awareness

‘They put him on my chest for the first time. The doctors did a double take and immediately took him back. ‘Treacher Collins? WHAT?’: Little boy with Treacher Collins Syndrome spreads kindness and acceptance

“FINALLY! I was induced, and FOUR days later, PJ came out! His dad and I cried tears of joy. Then the doctors did a double take and took him away. I thought he was the most beautiful boy, but I feared how he would be treated by other kids. He will always look this way.”

‘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.”

‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ 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.”

‘My manager interrupted. ‘Wait, what? You need to get that checked out.’ I’d lie and say I was ‘gay.’ It was easier to explain.’: Woman shares candid reality of being asexual, ‘I’m not broken’

“It all hit me in high school. ‘Why is everyone obsessed with sex?’ It had never occurred to me sex was a huge part of life. Couples would make out in the stairways. Sexually active friends would re-tell their experiences in detail. I was disgusted. My therapist would ask if I was ‘this way’ because of my parents, who didn’t have a good relationship when I was growing up. People think a person, especially a woman, need to have a partner to be happy.”

‘Smoking when you have cancer? Are you insane? You might as well jump in front of a train!’ My first time going outside as a baldie was horrible.’: Woman with alopecia advocates for hair loss, ‘I am beautiful, with or without hair’

“I was known for my beautiful hair. It was one of my biggest ‘selling points.’ One day, I woke up and my hair started to fall out. ‘When you are almost bald, please come back and we will look at it again.’ Five days later, I was back. I went from having really beautiful hair to being a baldie with a wig.”

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