Our daughter, Elisa was diagnosed with Lafora Disease at the age of 14. She has had it for nine years now. She went from a vibrant, athletic, straight A student to a wheelchair-bound young adult. She can no longer walk, eat by herself, go to the bathroom, or have complete thoughts. She suffers from constant myclonic seizures and gran-mal seizures. From where she was, to where she is now, her life is just so sad.
She watches television or movies all day, usually the same ones over and over because she can’t remember what she is watching. She gets sad and cries because at the age of twenty-three, she is aware she should be enjoying life, going out with friends and working. She has never had the opportunity to go on a first date or get that first kiss, and she will never get married or have children.
Lafora Disease, also called Lafora progressive myclonus epilepsy, is a rare, progressive and very degenerative form of epilepsy which ultimately is terminal. Once symptoms become present, life expectancy for Lafora Disease is 10 years, and Elisa is currently in her ninth year.
Our hope is that a cure will be found in her lifetime, but due to the time frame of her disease, our reality is that there will not be. By telling our story, we hope for further awareness of this terrible disease, and that more money will be donated to find a cure. Elisa’s story of hope can also be found at Chelseashope.org.
Elisa’s mom and dad – Tom and Mari