Petal teen surpasses life expectancy
Most 15-year-olds are worrying about getting their permits to drive and looking forward their first car. For JaCoby Bergeron, a Petal native fighting Batten Disease, his 15th birthday will be one celebrating another year of life.
The life expectancy for someone with Batten is 12 years old. However, Bergeron is getting ready for his 15th birthday and looking to celebrate with the Petal community.
On April 5, for those who eat Chili’s in Hattiesburg or Petal, a portion of the money spent will go to Bergeron to help him and his family attend a Batten Conference. In lieu of birthday gifts, there will also be a jar for donations.
Bergeron will be at the Chili’s in Petal from 5 to 7 p.m. to celebrate his birthday with Spiderman cake. His mother, Dixie, encourages those who are there to stop by their table and meet him.
Those who are unable to make it can also donate to their gofundme.com page or purchase a T-shirt for $20 via a link posted on his Journey with Batten Facebook page.
While Dixie and her family are looking forward to celebrating Bergeron’s birthday, she knows her time with her son is limited.
“He was born normal, fine, met all his milestones,” Dixie said. “Or we thought he was fine. He has a rare neurological disease that is killing him slowly.”
Bergeron is the only known case in Mississippi of Batten disease, a genetic disease that leads to progressive neurological impairment, according to Batten Disease Support and Research Association (BDSRA).
It is a rare disease that brings with it seizures, visual impairment, personality and behavior changes, dementia and loss of motor skills, including the ability to walk, talk and communicate. But the worst part of the disease for Dixie is the uncertainty of another day with her son.
At age four he was believed to have behavioral problems, then the slurred speech began. At age seven he was tested and believed to have mild mental retardation.
Then Bergeron discovered his balance and coordination was off. At this point she said she opened the phone book and found a pediatrician to request a referral to a neurologist, where they finally received a diagnosis.
“It’s tough because you never know what the next day holds,” Dixie said. “It’s heartbreaking, terrifying. Ten years ago nobody could have told me I would be watching my son die.”
She recalls days when Bergeron played like a typical boy, riding his bike through their yard, stomping in mud puddles after the rain.
“Now he cannot spell his name, he cannot count to 10, he cannot brush his teeth,” she said. “He can’t do anything by himself.”
However, Bergeron is fortunate to not have as severe problems as many his age with Batten do. He is able to speak some, such as when his mother asks what he would like for dinner. Bergeron is quick to respond with “hamburger,” his favorite.
“His sister (Myracle) is seven, and it is sad that she knows words like feeding tubes and trach, because it is a subject that you have to face. We just take it one day at a time,” Dixie said.
“I just want everyone to know this disease is real, it’s rare and it’s fatal.”
Because the disease is genetic, Dixie said Myracle and her future spouse will have to be tested before they are able to have children as there is a possibility of passing Batten down to them.
Dixie is thankful for the community that BDSRA offers.
She finds it difficult to communicate with many parents as they do not understand what she goes through, but with BDSRA she is connected with others who are facing similar situations as her. This community found out about Bergeron’s love of Scooby Doo, so they provided him with Scooby décor for his room from a bedspread down to the light switch cover. To keep up with Bergeron, “like” his Facebook page JaCoby’s Journey with Batten.