Fundraiser at Cotillion Set to Battle Rare, Deadly Childhood Disease

On Saturday May 5, Cotillion Banquets in Palatine will host "A Fifth Season…Brightening the Landscape of Batten Disease" fundraiser to help find a cure for the rare and fatal inherited disorder of the nervous system.

Five children from the Chicago area—including a 6-year-old and 8-year-old from Downers Grove—are currently living with the Late Infantile form of this disease and all will be honored at the upcoming fundraiser, now in its second year.

A 7-year-old Carpentersville girl, Bridget Rose Kennicott, is one of the children who were diagnosed with Batten Disease in 2009. Since her diagnosis, Bridget’s parents say her condition has deteriorated significantly.

“Bridget’s demise happened very rapidly,” said Sara Kennicott, Bridget’s mother. “Between the ages of 3 and 4, she completely lost her vision, physical coordination and refused to eat. She cannot communicate in any way and is wheelchair-bound.”

Bridget is now entirely fed through a tube, but maintains her sense of hearing and sense of touch.

“She gets comfort when we are holding her close,” Kennicott said.

The disease, which typically begins in childhood as vision problems or seizures, has four forms: Infantile, Late Infantile, Juvenile and Adult NCL. Over time, children with the disease suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually, they become blind, bedridden and demented, according to the National Institute of Neurological Disorders and Stroke.

Bridget's diagnosis is bleak. Children diagnosed with Late Infantile Batten Disease have a life expectancy of 8 to 12 years of age, but Kennicott says that number is more likely to be at 10 years old.

Kennicott is hopeful the upcoming fundraiser can help other families whose children were recently diagnosed, or those who may someday have a child who is diagnosed with the disease.

“We didn’t start raising money to only help our child,” Kennicott said. “We know we can do more, we can help other kids who are affected by this horrible disease."

The four other children who are the inspiration behind the fundraiser include 7-year-old Ethan from Elmhurst, Jasper, 7, whose family recently relocated to the Netherlands and two siblings, 8-year-old Noah and 6-year-old Laine, from Downers Grove.

The disease is considered an 'orphan disease' because so few people are diagnosed each year. Batten disease occurrs in an estimated 2 to 4 of every 100,000 live births in the United States, according to the National Institute of Neurological Disorders and Stroke. The parents of children with Batten both have a recessive gene that causes the disease, and subsequent siblings of children diagnosed have a 25 percent chance of also being diagnosed with it.

The fundraiser's website says it is called “Fifth Season,” because: If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away.

The gala will raise funds for Batten Disease research and will be held on Saturday, May 5 at 5 p.m. at , 360 S. Creekside Drive. It will include special guest appearances, live and silent auctions, Cinco de Mayo-themed margaritas and live music. An extensive appetizer, dessert and open bar also will be included.

For more information, to purchase tickets online or to make a donation visit http://www.4cures.org/home/a_fifth_season_fundraiser.