Teens raise money after 4-year-old cousin dies of rare disease

BROCKTON, Mass. — A 15-year-old's heart was with her young cousin as she served up cups of lemonade in Brockton Saturday.

"He always had spikey hair, the bluest eyes and the longest eye lashes...he inspired so many without even saying word," she said.

Bayleigh Westerlund and her best friend decided to start an annual lemonade fundraiser after Dylan Manning, her cousin, passed away from a rare genetic disorder called Tay-Sachs. It has no cure and the life expectancy is three to five years.

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"We had no idea what Tay-Sachs was. And when you heard it was fatal disease, it's terminal, and that he's a child...that will never grow up," said Ellie Westerlund, Dylan's aunt, trailing off.

Ellie told FOX25 there were lots of tears when they first learned of Dylan's fate. The disease causes neurological deterioration until death. Dylan was just 4 years old when he passed.

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"It was like having an angel in your house," said Ellie.

Bayleigh and her friend decided to hold the fundraiser to raise money for the National Tay-Sachs and Allied Disease Association and to spread awareness.

"So that no other kids has to go through what Dylan had to," said Bayleigh.

The National Tay-Sachs and Allied Disease Association supports research for a cure and holds conferences to connect families affected by Tay-Sachs and similar neurological diseases.

Last year the lemonade stand raised $1,200, and they hope to beat that.

Cox Media Group