Young Largo Mother Copes With Fatal Disease As Family Hosts Benefit Golf Tournament

LARGO, FL — The day Brittany was born 34 years ago, on Jan. 19, 1987, was one of the happiest days of Diane Fendley's life.

Fendley was 21 years old when she and her former husband, Michael Bosson, welcomed their daughter into the world.

Michael Bosson was adopted and didn't know anything about his family history. But Diane Fendley recognized that something was terribly wrong when he began having difficulty with speech, controlling his body movements and walking.

The diagnosis was a blow to the young parents.

"We learned Michael was positive for HD (Huntington's disease)," Fendley said. "We didn't even know this disease was a possibility. Then I learned that Brittany had a 50 percent chance of getting it as well. No mother wants to think about the fact that her perfect child could possibly have a disease that no one knew about."

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Huntington's Chorea is a progressive brain disorder caused by a single defective gene on chromosome 4 called "huntingtin."

According to the Huntington's Disease Society of America, Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities, and has no cure.

The brain disease is passed down in families from generation to generation. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.

Five years ago, after Brittany Bosson gave birth to her daughter, Kennedy, Diane Fendley realized that her daughter hadn't beaten the odds.

"I started seeing things in Brittany much like I did in Michael after she had Kennedy," Fendley said. Doctors confirmed her suspicions.

"I already knew in my heart what they were going to tell me," Fendley said. "Then I had to sit there and tell her she was positive for a disease that no one deserves."

As the disease quickly progressed, Brittany Bosson was forced to abandon her studies and dream of working in the medical field. She could no longer retain the information she'd studied and was unable to take tests.

Shortly after, she lost the ability to drive and began having problems speaking coherently.

"HC is basically taking over her brain, the command center of her body," Fendley said. "She struggles with balance, walking and speech. She can't control her body movements and swallowing. We have to be very careful when she eats to avoid choking."

Brittany Bosson now depends on a walker or wheelchair to get around.

Nevertheless, her positive attitude has been inspirational to family and friends, and more than a few strangers.

"I enjoy every day," Bosson said.

"She has the biggest heart. She is the biggest inspiration to everyone who knows her," Fendley said. "She always has a smile on her face, and this girl is faced with challenges every day that no one realizes. But that spirit of hers never dims."

Since 1991, the Huntington's Disease Society of America has raised money for and funded research and clinical drug trials, seeking treatments to reduce the progression and symptoms of the disease and ultimately finding a cure.

It's a mission that's become especially important to Diane Fendley and Brittany's stepfather, Rich Fendley, who have organized the Brittany's Hope for Huntington's Charity Golf Tournament in conjunction with the Huntington's Disease Society of America's South Florida Chapter on Monday, Oct. 18 from 10:30 a.m. to 6 p.m. at East Bay Golf Club at 702 Country Club Drive in Largo.

"We will not give up hope because hope is what gets us through this," Diane Fendley said. "I have a granddaughter who has a 50 percent chance of carrying this disease as well, so everything we do is for all of them."

The tournament is sponsored by Interior Fusion, a commercial office furniture company that Rich Fendley, a military veteran, founded in Largo in 2008. It has since expanded to Jacksonville and Melbourne.

The four-player scramble tournament will get underway with registration and coffee at 10:30 a.m. followed by a shotgun start at noon.

The awards ceremony at 6 p.m. will include the announcement of winners of a silent auction and raffle along with a barbecue dinner.

Registration is $150 for a single player and $500 per foursome.

All proceeds will go to the Huntington's Disease Society of America.

To register for the tournament, click here.