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Fayeteville mom fighting the 'monster'

Event to raise funds for Alstrom Syndrome, scholarship

Brennan Stoddard was a typical teenager.

He loved sports, music and food, and was constantly on the phone talking with his girlfriend, said his mother Kelly Hey. He was an honor roll student at Fayetteville-Manlius High School, and had big plans to attend college and one day open his own restaurant.

But on July 14, 2009, Stoddard's life came to an abrupt end. He lived his 19 years with Alstrom Syndrome, a rare and progressive genetic disorder, often referred to as the "monster." Alstrom Syndrome affects multiple organ systems in the body, and left Stoddard blind and with hearing loss.

His death was the result of a sudden onset of dilated cardiomyopathy, another condition that may occur in people with this disorder, typically during infancy or in adolescence.

"We did everything the doctors told us to," Hey said. "He had a heart sonogram and ECG every six months; blood work to keep up his kidney and liver function. But this disease was/is relentless."

Stoddard was diagnosed with Alstrom Syndrome at age 10, after a series of misdiagnoses with other disorders, Hey said, adding it had been a long journey.

"Any parent that has a child diagnosed with a life altering disease will tell you it's like riding a rollercoaster that you can never get off," Hey said. "There were years of denial, anger, bargaining with God and just plain despair."

But with Brennan around, the family was unable to wallow in self-pity for too long.

"He was courageous, full of life and had a sense of determination that was inspiring to all who knew him," Hey affirmed. "He never let Alstrom Syndrome define him."

From 1 to 8 p.m. Saturday April 24, Stoddard's family is holding their first annual fundraiser at Woody's Jerkwater Pub in Mattydale to raise money for research and to establish the Brennan T. Stoddard Memorial Scholarship Fund. TJ Sacco and Hank, and Ben Blair and Friends will provide the entertainment. Tickets are $10 at the door.

For more information on Alstrom Syndrome, alstrom.org.

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