glaucoma

‘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.”

‘A month before my wedding, I woke up unable to see 2 feet in front of me. I chalked it up to a fluke. I was so naive.’: Woman shares emotional battle with Uveitus, ‘I’ll do whatever it takes to persevere’

“I woke up with blood-shot eyes. Everything was a blur. ‘This is going to go away. It can’t get worse.’ This is when my eyesight started to deteriorate. Here I was, 26 years old, a month before my dream wedding day. I had the most beautiful wedding dress, and desperately wanted to look good in my wedding photos. ‘How could this be happening to me?’ I was so angry at the world.”

‘After my C-section, I heard, ‘Wow! He’s got a big birthmark on his face.’: Baby is born with Port-Wine Stain and Sturge-Weber Syndrome, ‘Never did I think I would have to consider what anti-seizure medication would best keep my child thriving.’

“A bright reddish-purple color covered more than half of my newborn son’s face. ‘Will this birthmark fade? Will it get worse? What will other people think? Can this lead to other health issues?’ Looking back now, those first months of Leo’s life, I was living in fear. I was consumed by anxiety, exhaustion, and confusion.”

‘Something was seriously wrong with our daughter’s eyes. They were mostly pupil! I couldn’t look at my baby.’: After ‘normal, healthy’ pregnancy, mom receives Axenfeld-Rieger diagnosis

“Every time we’re out and a stranger compliments how big and beautiful her eyes are, I have a mental debate on whether or not I should mention her defect. I decide no, smile and say thank you. I’m always left with a weird feeling. I just pray she’ll always know how beautiful she is.”

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