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Nashville family aims to spread awareness about daughter’s rare condition

Posted at 7:43 AM, Apr 05, 2019
and last updated 2019-04-05 09:00:34-04

NASHVILLE, Tenn. (WTVF) — When Leslie Congdon has time in her busy life, she makes and sells cards that tell the story about her daughter Virginia’s rare condition.

"She's completely blind, she has seizures every day and she is severely delayed,” said Leslie.

Virginia has Aicardi Syndrome.

“She is missing the midline structure of her brain called the Corpus callosum,” said Leslie.

The National Library of Medicine says it's so rare that it only affects about one in 105,000 to 167,000 newborns. Leslie and her husband, Emil, say life became harder the older she got.

"Every other environment, it was difficult to get in and out of the house or in and out of the car,” said Emil.

That's what prompted the Congdons to sell cards and their small business called "Saint Virginia" was born just a little more than a year ago.

"Saint Virginia is what I lovingly like to call to help fund our handicapped lifestyle,” said Leslie.

It's certainly paying off. Leslie posted a video on social media and after going viral someone, someone donated a ramp.

The Congdons are still hoping Saint Virginia can help pay for this van and other equipment not covered by insurance. Even with their own challenges, they're grateful for the life they have.

They now have bigger plans for Saint Virginia.

"It's a teeny tiny company right now, and it doesn't bring in a lot of money, but the wish would be that it would become highly profitable and could help other Aicardi girls,” said Leslie.

To learn more about Saint Virginia, click here.