Golf tourney is family's stroke of love
Screenings of newborns can help prevent disorder
By Eliav Appelbaum eliav@theacorn.com

FINDING A CURE- The Scott family of Camarillo poses for a picture together on Christmas Day in 2006. Rod Scott, 42, and Kathleen Scott, 40, sit with their daughters, from left, Brooke, 20, Isabella, 7, and Jacquelyn, 4, who died Feb. 10, 2007 from Krabbe leukodystrophy, a fatal nervous system disease. The family is hosting a golf tournament in May at Sterling Hills Country Club with Hall of Fame NFL quarterback Jim Kelly to raise money for Hunter's Hope Foundation, which funds leukodystrophies research.

Kathleen Scott wants to do everything in her power to fight Krabbe leukodystrophy, what she calls a "cruel, hideous disease."

Scott's daughter Jacquelyn died of the degenerative nervous system disorder on Feb. 10, 2007, five months before her fifth birthday. In honor of her life, the Scott family has organized the Drive Fore Hope golf tournament at Sterling Hills Golf Course in Camarillo at 1 p.m Mon., May 19.

The benefit golf tournament will raise money for Hunter's Hope Foundation, an organization founded by former Buffalo Bills quarterback and NFL Hall of Famer Jim Kelly and his wife, Jill. Based in Orchard Park, N.Y., Hunter's Hope strives to increase awareness of Krabbe and other leukodystrophies, as well as raise money for research. The organization has raised more than $15 million. Kelly's son Hunter died of the same disease that took Jacquelyn's life.

Jim and Jill Kelly are expected to attend Drive Fore Hope.

Kathleen Scott, 40, whose family has lived in Camarillo since 1969, wants people to know about the degenerative disease that affects one in every 100,000 babies in the United States.

"Jacquelyn endured some hideous struggles that I would never wish upon anybody, much less a child," said Scott, who has developed a close friendship with Jill Kelly. "We're trying to hopefully make a difference in other people's lives. We need to help somebody, even somebody we don't know, maybe generations from now. Hopefully our small act will make a difference."

The Scotts also organized a Celebration of Life fundraiser at Harley's Camarillo Bowl on July 10, 2007, what would have been Jacquelyn's fifth birthday. Harley's donated the bowling alley for a few hours, and the Scotts raised $8,000. They plan to continue the event this year.

Hunter's Hope has also been making a national push to promote Universal Newborn Screening at birth to test for every possible disease. California currently tests for 29 disorders in newborns, not including Krabbe or other leukodystrophies.

Scott said newborn screening is important because Krabbe symptoms often don't appear until three to six months after birth. For instance, Jacquelyn was born healthy but started suffering from seizures at four weeks old and was incorrectly diagnosed with cerebral palsy. Only at 11 months old was her diagnosis changed to Krabbe.

"If this disease were detected in a simple blood test, it can be reversed and save children's lives," Scott said.

"Our daughter touched so many people's lives," she continued. "She was an amazing, amazing blessing to us. She really took us to a new level of understanding in life and what this life is really all about. And that's a gift we could never, ever repay."

Drive Fore Hope has room for 144 golfers, and about a quarter of the spots had been filled up by press time. The tournament is still accepting sponsors, advertising and golfers, which cost $200 per player and $800 per foursome. The deadline for sponsorships ends April 28, while the cutoff for player sign-ups is May 10.

For more information, visit www.thedrive4hope.org or call (805) 302-5761.