PETAL, Miss – Doctors describe the odds of inheriting Batten disease, like a chance of winning the lottery; meaning it’s highly unlikely to possess. That fatal disease began attacking the body of a high school student about 10 years ago. We sat down with the family to learn more about “Jacoby’s Journey with Batten.”
He appears to be a regular 13-year-old, but his body is deteriorating. His mom says she noticed subtle chances around the ages of 3 or 4, “It’s heartbreaking to know that he used to ride a bike and he can’t anymore. It makes you feel helpless as a parent to know that no matter how many doctors you go to, or what you do, there’s nothing you can do to stop this disease.”
Several doctors assumed other disabilities were contributing to the sudden behavior change, but a mother’s intuition is profound. He’s currently the only person in Mississippi with Batten disease.
“I finally got somebody to listen to me. I knew that something was going on with my baby that wasn’t normal. It was not mild mental retardation, it was not ADHD. It was not something that was a simple fix with orthopedics. Something was going on to make him regress.”
Until last month, Jacoby could walk. Currently his mom, Dixie, guides his every step.
His sister Myracle is only seven but she’s stepped up to help her family, “I get far back from him, just in case he falls.”
And that’s just another chapter in this disorder, vision was supposed to go first, followed by seizures.Thankfully he still has eyesight to enjoy his favorite pastime; school. Dixie says she’s grateful Jacoby is fighting to hold onto his vision because his life is full of joy, loss of vision would rob him of so much; like playing with Scooby-Doo toys.
“I want him to be as normal as possible for as long as possible. The day will come if this disease runs it’s typical course; Jacoby will not be able to eat, Jacoby will not be able to drink, he will not be able to see,” keeping him socialized and having a sense of normalcy is important for anyone battling this disease.
Jacoby has lived one year past the life expectancy and she wants him to make a mark in someone’s life, “He’s not going be a doctor or lawyer or have children, where his legacy will live on. So therefore, what we have for Jacoby is a legacy of bringing awareness about a disease that’s taking something from him everyday.”
Follow “Jacoby’s Journey with Batten”
To learn more about Batten disease click here