For Vickie Lamb – every moment with her daughter Amelia is precious.

“Here I thought I had a healthy child, and the next thing I know, she’s being whisked off to Children’s Mercy.”

A regular checkup revealed a dire disease.

“It probably was when she was 6-months-old that we received an official diagnosis, that she had Diamond-Blackfan Anemia.”

It’s a rare disorder where Amelia’s body doesn’t make enough red blood cells.

Now, at 13-years-old, Amelia has to get a blood transfusion every three weeks.

“It takes about, maybe the longest, an entire school day,” said Amelia.

But it’s her only option.

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