Every Second Counts: Fighting For Amelia

Her lips were blue when she was born.

Her hands were blue. Her feet were blue. Her fingernails were blue. She was still in the hospital. Still surrounded by the people whose entire job was to make sure she was okay.

Not one of them caught it.

For the first year of her life my daughter Amelia was in heart failure. I brought every concern to every appointment. I was dismissed every single time. She couldn’t hold her head up. She wasn’t crawling. She wasn’t gaining weight. And every doctor sent us home with the same answer.

She’s fine.

She was not fine.

Three days after her first birthday we ended up in the emergency room. In one night a real doctor found what an entire medical system had missed for an entire year.

Three holes in her heart.

She was in heart failure since the day she was born.

She waited eight more months for surgery. She went into a 14-hour open heart surgery with an active viral infection the system failed to catch. Her chest could not be closed afterward. She was on ECMO. A blood clot was found in her brain.

She survived all of it.

After surgery genetic testing found something nobody had ever seen in our family. A spontaneous mutation in a gene called FLNC. A variant so rare science doesn’t fully know yet what it means for her future.

She is three years old. She jumps. She climbs. She has claimed the kitchen as her own. She chases cherries and reaches for her little sister’s hand.

And I have never stopped fighting for her.

Every Second Counts is the campaign I built to find a cure. To get answers for a genetic variant science hasn’t caught up to yet. To build the early detection tool that could have caught what was missed before she ever spent a single day in heart failure. To protect her future. Her medical care. Her children someday.

Phase One goal: $100,000.

Every dollar goes directly toward FLNC research, early detection development, Amelia’s ongoing care, and the family programs keeping CHD families alive while they wait.

Every second she fought without anyone knowing she was fighting — this is for that.

Every second science doesn’t have answers — this is for that.

Every second another family sits in a waiting room alone — this is for that.

Donate today. Share her story. Help us find what she deserves.

Every second counts.