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Rare diseases

Rare disease with fatal diagnosis doesn't stop this woman from living life – and helping others

Last month, Jessie Jackson's friends and family sang her happy birthday a little early.

Jessie doesn't turn 30 until Dec. 12, but for the past five years on the anniversary of her diagnosis, her parents have hosted a fundraiser. They weren't taking any chances.

Jessie inherited a rare genetic condition called GM1 gangliosidosis that affects  about 200 people worldwide and progressively destroys nerve cells in the brain. She uttered her last sentence in elementary school and has been in a wheelchair full-time for years. 

None of that has stopped her from having as much fun as possible, most of it courtesy of her mother, Merlie, her father, David, and her devoted friends.