Chili's in Petal to donate proceeds to boy with Batten disease - WDAM-TV 7-News, Weather, Sports-Hattiesburg, MS

Chili's in Petal to donate proceeds to boy with Batten disease

Jacoby Bergeron/Photo credit: WDAM Jacoby Bergeron/Photo credit: WDAM
Photo credit: WDAM Photo credit: WDAM
PETAL, MS (WDAM) -

Chili’s on Evelyn Gandy Parkway in Petal is giving part of Tuesday evening’s proceeds to help Jacoby Bergeron.

He has the state’s only known case of the neurological degenerative disease disorder, Batten disease.

The money will help the family travel to St. Louis, Missouri, to meet with specialist doctors and researchers.
 
“Jacoby was perfectly normal when he was born,” said Dixie Bergeron, Jacoby’s mother. “He loved running around and riding his bike, but around ages 3 or 4 something changed in him. Doctors thought it might have been ADHD (Attention Deficit Hyperactivity Disorder) or mild mental retardation, but I knew it was something way more serious than that.”
 
Jacoby, now 14, was diagnosed with late-infantile neuronal ceroid lipofuscinosis, or Batten disease.

Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood, according to the National Institute of Neurological Disorders and Stroke. 

The disease is caused by a genetic mutation in certain genes from both mother and father. At this time, there is no cure or treatment that can stop or reverse the disease.
“It’s gotten to the point now where he can’t be left alone,” Dixie Bergeron said. “He can’t usually walk without assistance. He has trouble communicating with others. He’s forgotten a lot of the stuff he learned when he was going to school. Now he’s starting to get seizures, a common symptom of this disease.”
 
The disease has taken a great toll not only on Jacoby, but also the rest of the family. His mother had to quit her job because no other family members were available to care for Jacoby if she was not at home.
 
The funds raised by Chili’s restaurant will help the family travel to St. Louis, Missouri, to meet with other parents of children with the disease.

Also, there will be gas expenses and lodging as well as food.

Once there, there will be doctors and researchers devoted to finding out and sharing information about this particular disease.

“Words cannot even describe how it feels, that somebody would listen and that somebody wants to help,” Dixie Bergeron said. “When this is your whole world and it just means a lot that they think enough of Jacoby that they would offer to help us.”
 
The conference in St. Louis is from July 13-17.
 Copyright 2016 WDAM. All rights reserved.

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