Alexis in front of NBC studios, NYC

New York, USA

Alexis, now 19, was diagnosed two and a half years ago with Lafora disease. Pre-pandemic, Alexis was a healthy 16-year-old, bright student. She played the violin, was an avid reader, and was a swimmer on the Freeport High School swim team.

Alexis pre-symptoms

Alexis was like all other teenage girls… She was active, enjoyed dancing, listening to Harry Styles and Billie Eilish, and loved spending time with her family and friends. Alexis also volunteered full-time in a neonatal intensive care unit at Mount Sinai South Nassau Hospital for two summers. Her dream was to become a registered nurse.

Sadly, her life changed quickly and dramatically over the past three years. She experienced frequent seizures, could no longer attend school in person, and later lost her ability to walk and talk.

Alexis in her wheelchair

Now, Alexis is in a customized wheelchair. She requires nebulizer treatments to prevent pneumonia and receives physical therapy to maintain strength in her muscles and occupational and speech therapy. She recently had a feeding tube inserted in her abdomen as she has difficulty swallowing solid food.

Alexis is an only child. Her single mother, Altagracia (“AC ), tends to her every need, with the assistance of a nurse and her Godmother. Despite this devastating diagnosis, AC’s faith has given her the strength to care for Alexis and the hope that a cure will eventually be found.

May 2023 Update

For most of 2023, Alexis was stable. Just recently, within the last couple of weeks, her seizure activity has picked up a great deal. As a result, her behavior is different. Though Alexis hasn’t had any grand mal seizures, she is having a lot of myoclonus. Alexis hasn’t been able to even stand as much in the past couple of weeks. Her verbal communication has become worse. Now that it’s summer, her loved ones plan to try and get her out as often as possible to enjoy the weather and family.

Angels for Alexis

Her team of doctors, including geneticists and neurologists, has applied for FDA approval for the emergency use of medication to target the glycogen buildup in her muscles. However, Alexis’s insurance company will not cover the cost of this treatment, even though it could slow down the pace of this disease and give Alexis a fighting chance. AC started a GoFundMe for Alexis in December 2022. 100% of the proceeds will go towards the cost of this medication and any additional expenses that may be incurred during the process.

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