Jacoby Bergeron’s 16th birthday will be about as sweet as they get. Jacoby is set to celebrate with family, friends and anybody who wants to attend his red-carpet bash set for 7 p.m. Sunday, April 8, at the C.E. Roy Community Center, 300 East 5th Street, Hattiesburg.
Things got rolling when Jacoby’s mother, Dixie, made a Facebook post asking for suggestions for an inexpensive birthday party and a baker to make her son a Walking Dead (his favorite television show) cake.
Enter LaToya Jackson and Brian Brown, who saw the post and sprang into action. Jackson, who has three children of her own, suggested a baker who could make the cake. Brown, who also saw Bergeron’s post about the cake, reached out to Jackson, asking what they could do to help.
“I read it and I read it again, and said to myself, “It has to be much more that just a cake; he needs a party,” said Brown, a Hattiesburg resident who works offshore. “I reached out to Latoya and we must do something. “I told him I didn’t even know these people,” Jackson said. “But I felt it and knew this was something we could do. I have a heart for stuff like this.”
The two got in touch with Bergeron, who learned that Jacoby had lived past the life expectancy the doctors had predicted. “It was then that I knew this wasn’t just about a 16th birthday party, but a hero’s celebration,” said Brown. “We are all stewards for God and when he calls we must answer to his tasks.”
Jackson got the building donated and from there things just snowballed via phone, texts and emails from others wanting to be a part of this special day.
Jacoby, a student at Petal High School, battles Batten disease (late-infantile neuronal ceroid lipofuscinosis), which is a terminal inherited disorder of the nervous system that typically begins in childhood. Children with infantile Batten disease often die in early childhood. Jacoby is currently the only person in the state who suffers from the disease.
Symptoms generally include progressive vision loss leading to blindness, seizures, movement disorder, and dementia, according to the National Institute of Neurological Disorders and Stroke. Other symptoms that continue to worsen over time include learning difficulties, poor concentration, and progressive loss of language skills and speech. Most children become bedridden and unable to communicate. At this time, there is no treatment that can stop or reverse the disease.
Jacoby, who was diagnosed several years ago, is wheelchair bound and has limited conversation, but does have a special way of communicating with his mother and sister.
Jackson met with Dixie Bergeron to see what kind of birthday he wanted. The most pressing issue for Jacoby was the cake. “He looked at me with those big ole green eyes and was so excited,” Jackson said.
“There’s just been this outpouring of love and support from people who don’t know him.”
A $100 donation came in for decorations, as well as other contributions.
“When I tell you prayers go up blessings will come down!” said Bergeron on her Facebook page. “God does everything in His time, not ours! God placed LaToya Jackson in our lives and I know it was only Him that did this! She will never understand what a blessing she has been to our family in such a short period of time! Thank you God and thank you Latoya!”
Jackson said God gets all the glory. “I’m just a vessel! Thank you for sharing Jacoby with me. It’s changed our lives!
“The greatest thing I’ve learned from this is that although his disease is terminal, he’s the happiest kid I’ve ever met,” said Jackson. “He smiled the entire time.”
She presented him a copy of the party invitation, which he wanted placed right up next to the television, so he could see them both at the same time.
Jackson asked to have a picture made with Jacoby, only to find out he required a kiss before he would allow a picture made. “He’s quite the lady’s man,” she said.
Jackson and Brown have coordinated a party bus to carry Jacoby and his family to the red-carpet event. They’ve also gotten him a suit to wear, a motor club escort, a group of motorcyclists who will serve as escorts to the venue site, where there will be a deejay, food, with caterers and bakers providing an assortment of goodies, balloons and lots more.
“I didn’t to this for any recognition on my part,” said Brown. “I just wanted to celebrate with the real hero. I am a believer in the power of God and I’m witnessing it every day. I see the people that have pulled together to be a part of this to make it a success. I pray that this sheds light on Jacoby’s situation and he gets the care he needs. I pray that we Mississippians pull together and make him OUR son, brother, nephew, cousin and grandson to celebrate, uplift, love, pray for and give him the care he needs. I thank God daily for choosing me for the platform to beacon for his purpose.”
