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Rare disease, fatal diagnosis doesn’t stop a woman from being on the to-do list


Rare disease, fatal diagnosis doesn’t stop a woman from being on the to-do list

Jessie Jackson’s friends and family sang her happy birthday earlier this month.

Jessie isn’t 30 until December 12, but for the past five years on the anniversary of her diagnosis, her parents have organized a fundraiser. They weren’t taking any chances.

Jessie inherited a rare genetic disorder called GM1 gangliosidosis which affects around 200 people worldwide and gradually destroys nerve cells in the brain. She said her last sentence in elementary school and has been in a wheelchair full time for years.

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