tinkerbell

‘I’m waiting for my daughter to die. Every day I wake up, she might not.’: Mom gives birth to ‘rainbow baby’ with ‘rare, terminal’ Sanfilippo syndrome, makes ‘each day count’

“She went from surpassing all her milestones to not being able to walk, drink, or eat. I was tired of going home from the hospital with no answers, the typical run around from doctors. One day, with 10 residents, 5 doctors, and 4 nurses in front of me, I said, and I quote, ‘Discharge her again and I promise I’ll sue every single person standing in this room.’ Needless to say, they ran every test. I now know that instead of her burying me, I’ll be burying her.”

‘Her eyes were huge, her skull was misshapen. Even though we had prepared ourselves as best as we could, it was still a shock to see Emmy in the flesh.’: Mom gives birth to baby with Pfeiffer Syndrome

“My honest thought when I first saw her was, ‘It wasn’t supposed to be this bad.’ Our doctor didn’t say anything. The nurses were silent. Emmy was silent. It was eerie and terrifying. We know she will always look different and will face bullies in her lifetime, but our goal is to always show her how loved she truly is.”

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