Angels for Alexis

Please help raise $150,000 for Alexis’ medical treatment to fight Lafora Disease. Become one of “Alexis’ Angels”!

Alexis, our 19-year-old, beautiful young girl, was diagnosed 3 years ago with one of the most ultra-rare diseases on earth, Lafora Disease. Only 80 children worldwide have been identified with Lafora Disease - the worst form of epilepsy. This progressive, degenerative disease results in death 10 years after the onset of symptoms.

Despite this devastating diagnosis, we remain hopeful for a cure, and recently, a therapeutics company developed an IV infusion that targets the “Lafora bodies” (glycogen build-up) which cause this horrible disease. Our hope is that this medication slows down or stops the progression of the disease, and grants Alexis more time while a cure is developed within the next 1-3 years.

Her team of doctors, including geneticists and neurologists, have applied for FDA approval for the emergency use of this medication. Unfortunately, though, Alexis’ insurance company will not cover the cost for this treatment, and we desperately need your help.

Alexis’ Story:

Just pre-pandemic, Alexis was a healthy 16-year-old, bright student. She played the violin, was an avid reader, and a swimmer on the Freeport High School swim team, located in New York. She was like all other teenage girls… active, enjoyed dancing, loved listening to Harry Styles & Billie Eilish, and spending time with her family and friends. She volunteered full-time in a neonatal intensive care unit in Mount Sinai South Nassau Hospital for two summers, and her dream was to become a registered nurse.

Sadly, over the past three years, her life changed quickly and dramatically. She experienced frequent seizures, was no longer able to attend school in-person, and later lost her ability to walk and talk. Alexis is now in a customized wheelchair. She requires nebulizer treatments to prevent pneumonia and receives physical, occupational and speech therapy. In the summer of 2022, she had to have a feeding tube inserted in her abdomen due to her 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. AC’s faith has given her the strength to care for Alexis around the clock, and the belief that a cure will eventually be found for her daughter.

This is why we urgently need your help in raising the money for this only treatment that will slow down the pace of this disease and give Alexis a fighting chance. 100% of the proceeds will go towards the cost of the treatment and any additional expenses that may be incurred during the process.

Please become one of “Alexis’ Angels” by donating today and by sharing her story with everyone you know!

On behalf of Alexis, Altagracia and her family and friends, Thank You!

If you prefer, checks or money orders may also be sent to:

Chelsea’s Hope Lafora Children Research Fund

c/o ALEXIS RODRIGUEZ

PO Box 348626

Sacramento, CA 95834

Remember to mention ‘TEAM ALEXIS’ for a tax deductable receipt.

View the video of Alexis' struggle with Lafora Disease, as featured on News 12 Long Island in December 2022:

Alexis with her mom, Altagracia, at her prom night in 2022...

On her recent 19th birthday...

Enjoying the holidays with her mom, grandmother and aunt...