Ogdens remembering son with fundraising dinner

The Ogdens — including Dave, Shelly and son Kaleb — went to Melbourne Beach for some family time together courtesy of Make-A-Wish Central and Northern Florida, based in Maitland.

WINTER GARDEN - Kaleb Ogden would have turned 6 later this month, and his family is planning a big celebration of sorts, a spaghetti dinner to remember their little boy and to call attention to the disease that took his life two years ago.

Dave Ogden, the Windermere police chief, and his wife, Shelly, are holding a “Dinner to Remember” fundraiser from 3-7 p.m. Saturday, Sept. 27, at the American Legion post, 271 W. Plant St., Winter Garden. The family invites the community to an afternoon of food, live entertainment, a silent auction and a raffle.

Chris Glover, of Orlando, will sing and play acoustic guitar. He is a family friend, and he and Shelly Ogden worked on the same squad at the Orange County Sheriff’s Office before she retired to take care of Kaleb.

Tickets for the meal are $5; raffle tickets will be sold at the event.

Proceeds from the dinner, raffle and silent auction will be given to the National Tay-Sachs and Allied Diseases organization to continue research.

Kaleb was diagnosed in 2010 with a rare, genetic and terminal illness called Sandhoff disease. This lipid storage disorder is a severe form of the more common Tay-Sachs disease, and children with Sandhoff experience a progressive deterioration of the central nervous system. It is caused by a deficiency of an enzyme to the brain that ultimately affects other organs of the body. There is no cure or treatment for this disease, and it is always fatal.

Life expectancy is 3 to 4 years of age; Kaleb died Oct. 3, 2012, eight days after his fourth birthday. By that time, the disease had robbed him of his eyesight and his ability to talk and move and he was having frequent seizures.

The family is grateful for a weeklong vacation to Melbourne Beach in 2011 through Make-A-Wish Central and Northern Florida. It was a huge party that included Kaleb, his older sister, one of his two older brothers, parents, grandparents, aunts and uncles. Photographs were taken courtesy of Make-A-Wish, and the Ogdens cherish this family gift.

They are also continuing to raise money for NTSAD in hopes that other families might one day be spared the overwhelming grief of losing a child.

“These diseases are so rare that you don’t get a lot of money from the drug companies,” Shelly Ogden said. “Fundraising is how they get their money to do research.”

This is the first fundraiser the family has hosted since Kaleb’s death. They still attend conferences and remain in contact with newly diagnosed families.

Kaleb “was diagnosed in 2010, so it’s only been two years since he died,” Shelly Ogden said. “We’re taking it one day at a time. Sometimes it’s hard to stay involved, but I can’t imagine not being involved. It’s hard to watch other families go through it, but I feel like I’m helping them.”

This year, Shelly Ogden said, family friends lost their young son, William. This family had attended the Ogdens’ first spaghetti fundraiser in 2011. Two new families in South Florida were diagnosed earlier this year, as well.

Worldwide, 26 children died in 2013 from Tay-Sachs or one of the allied diseases.

For more about Sandhoff’s disease, go to ntsad.org. To learn more about Kaleb, go to ogdenfamily.weebly.com and click on “Our Story.”