An Update on Alexis | #WarriorWednesday
An update on Alexis was provided by Kim Marino on May 16, 2023:
“Alexis has been stable for the last couple of months but just recently within the last couple of weeks seizure activity has picked up a great deal. The seizure activity has led to behavior problems which is understandable. Though we haven’t had any gran mal seizures we are having a lot of myoclonics. Alexis hasn’t been able to even stand as much as she has been in the past couple of weeks. Her verbal communication has become worse. Now that summer is here we will try and get her out as often as possible to enjoy the weather and family.”
As Alexis’s Lafora disease symptoms continue progressing, helping her access an experimental treatment is more important than ever. 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. Her mother, 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. You can donate to become one of Alexis’s Angels today and share her story with everyone you know!
Chelsea’s Hope c/o Dr. Donohue
