genetic syndrome

‘We lost our precious Amie. We knew surgery was coming. She was in the best hands. Try as he might, we lost her.’: Mom’s emotional journey to adopting their ‘fierce, spunky’ daughter, only to lose her 2 months ago

“Then that fateful phone call. Oh, how that phone call would change our lives. We were contemplating what empty nesting would look like. And then Amie happened. She had a way of wrapping everyone around her little finger. Quickly, we realized Amie wasn’t like our other babies. She already had two open heart surgeries, and there were more in the future. Amie was feisty, and had a personality as big as the sky.”

‘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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