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Fontana’s child fights for life with a rare genetic disorder called Batten’s disease while parents try to raise awareness by encouraging their parents to look for early signs.
For Lucy Antillon, wandering around the playground is no small feat. Each step feels like it’s a huge leap.
The struggle of a 4-year-old girl came unexpectedly as she began talking at six months and showed early signs of childhood development.
Lucy’s parents, Destiny Moore and Sean Antilon, said there were no signs of any future challenges.
“She was progressing at that rate, and we were really excited about it,” recalled her mother. “And we started a regression.”
At the age of two, I received a series of medical diagnoses ranging from seizures and diabetes to epilepsy.
Dr. Gamille Fitte with Fontana’s Kaiser Permanente, a neurologist at Lucy, said the unusual type of attack encouraged Lucy to give her parents a genetic test.
After the test results occur, Lucy is diagnosed with Batten’s disease, preventing the brain from breaking down fat within its own cells, causing language problems. It is fatal and there is no cure.
“Without treatment, most children pass by the age of 10,” he said. Dr. Darian Esfahani, pediatric neurosurgeon with Kaiser Permanente Los Angeles Medical Center.
Despite the devastating news that makes the world feel like it’s falling apart, Lucy’s parents have to stand up and fight for their little girl.
“It’s okay to say that you cry on the track on your way to the gym in the morning,” said Sean Antillion, Lucy’s father.
Dr. Fteeh presented a possible solution for Lucy’s parents. A team that includes Dr. Esfahani has come together to discover one form of Batten disease that Lucy can treat. Kaiser Permanente is one of the only facilities in LA (and one of five facilities in California) that offers Lucy type Batten disease procedures.
“It is a small reservoir or foam that is placed under the skin. It can bypass the natural barriers of the brain and allow the medicine to reach the brain itself,” Dr. Esfahani explained how the procedure works.
Since March, Lucy’s family will drive from Fontana to spend a long, stressful drainage day for her treatment, for procedures with Dr. Esfahani. But for her parents, spending every minute with a little girl with every ounce of hope is worth 15 hours.
“We’re looking forward to it now because we’re seeing her progress now,” Lucy’s father said her daughter is beginning to walk and speak better.
“With this treatment we’ll slowly get her back,” Lucy’s mom said. “This is a way that can slow the illness in the hopes of a cure coming.”
Dr. Fteeh said there are signs of hope that medicine is approaching finding a treatment.
“Gene therapy is a promising future for many of the rare neuropathy of children,” the neurologist said. “That’s what I want from Lucy.”
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