Long Island teen battles rare disease that affects less than 100 people globally
A Freeport High School alumnus is suffering from a rare and terminal disease that only affects 80 people worldwide.
Alexis Rodriguez, 19, had her first seizure in 2016. She went two years without suffering a seizure after being treated the first time. Then the seizures came back more frequently.
"She would complain to me that she felt like she was losing time when she was in the classroom," Rodriguez's mother, Altagracia Rodriguez said.
Altagracia says her daughter told her she felt like she was lost when her teacher was speaking.
Alexis was having what's known as absence seizures and no one had any idea.
After suffering some sudden falls, Alexis' mother brought her to the hospital where the doctors suggest genetic testing.
The family learned that she had a disease called Lafora.
In most cases, those who have the disease die 10 years after symptoms begin.
Alexis can no longer walk and her speech is difficult to understand.
"This illness robs them of everything - it eats at their cognitive - they lose all of it," Altagracia said.
Alexis' family hope that with the help of experimental drugs and other treatments, there might be a way to slow the disease down until a cure is found.
A GoFundMe page has been set up with the hopes of raising $150,000. Proceeds go towards the cost of medication and any additional expenses that could come up during her treatment.