LI Mom Opens Up About Daughter's Rare, Terminal Illness

FREEPORT, NY — A once vibrant girl from Freeport is battling a rare and fatal form of epilepsy.

Alexis Rodriguez graduated from Freeport High School, but the 19-year-old is now confined to a wheelchair as the illness worsens.

Doctors told Alexis' mother, Altagracia Cruz, that her diagnosis of Lafora disease is terminal. It typically will lead to death within 10 years of the onset of the first symptoms. Cruz said that was in 2016.

"I pray a lot and I don't wrap my mind around that," Cruz told Patch on Thursday. "You can't dwell on that because if we do, what enjoyment will we have."

Rodriguez was a healthy child with a normal childhood, who participated in the high school swim team and loved playing the violin and reading.

Her mom said Rodriguez always displayed an outgoing personality. However, she had her first seizure in the 10th grade. It took two more years before another seizure would develop. She was placed on a medicine, "and we all thought that's it."

But the seizures became more frequent and presented with different symptoms.

It took until 2019 for doctors to figure out the devastating diagnosis. So rare is Lafora that the National Institutes of Health estimates there are fewer than 5,000 cases in the U.S.

"She knows she has different epilepsy, but why tell her that we have a terminal illness?" Cruz said.

Her daughter went from being so active to having difficulty speaking and barely being able to lift a pen.

"It's hard for her to maneuver," her mother said. "Everything is a little more declining."

Cruz changed her work schedule to spend her days by Alexis' side as her caretaker. She also hired an aide to assist.

"As a parent— to see a child, you have so many hopes and dreams," she said through tears. "All of a sudden, her life has just completely changed."

As Lafora disease, which is genetic, progresses, it affects muscles throughout the body. Rodriguez wakes up with jolts. Her mother uses the power of prayer, hoping her daughter will start the day in peace.

The hardest part for Cruz is knowing her daughter won't survive.

"Looking at her face," Cruz broke down, thinking about her daughter's terminal illness.

The family has a GoFundMe page to help support the ongoing medical costs.

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