Five years ago, Chelsea Gerber, 19, a Danville resident, was about to begin Monte Vista High School, becoming a more independent teen, enjoying friends, and living a life filled with promise. Today Chelsea, 100% dependent upon others, is confined to a wheelchair and is unable to walk, talk, or adequately think. Chelsea has been diagnosed with Lafora.
Lafora is the most virulent, progressive and degenerative form of epilepsy known and usually strikes young healthy kids in their early teen years. With its devastating nature, Lafora slowly tears away their ability to walk, talk and function. Children with Lafora suffer from rampant grand mal seizures, loss of cognition and generally, within 10 years, they lose their life. LAFORA HAS NO CURE.
What transpired between Chelseaâ€™s diagnosis in January 2006 and now has been the birth of Chelseaâ€™s Hope: Lafora Children Research Fund. Chelseaâ€™s Hope began out of helplessness, isolation, devastation and a need to believe in miracles. With just a few hundred diagnosed cases of Lafora worldwide, there was little information available, no resources for families, and essentially no funding for research.
Chelseaâ€™s Hope, an IRS non-profit corporation, is the only organization dedicated to connecting families, creating awareness and raising funds for Lafora research. Within these past several years, our organization has grown into a community of families dedicated to emotionally supporting one another, who have become in their own right, experts in the care of their childrenâ€™s medical needs.
We have developed a strong bond with the few leading Lafora researchers in the world, presently at UCLA Medical Center and Sick Childrenâ€™s Hospital in Toronto, helping them by bringing forth an awareness of Lafora publicly, and thus, have been instrumental in helping families receive long sought after diagnosis for their children.
We are proud that Chelseaâ€™s Hope has raised over $225,000 for Lafora research. With these funds, protocols have been supported which has led to the recent FDA approval for the drug, Gentamicin, to be used on Lafora patients, those with certain mutations. This long awaited approval represents HOPE, while it is not a cure, it promises to halt the progression, temporarily, while a search for a cure continues. This is the first medical treatment that will be used on Lafora children as opposed to medications administered solely for seizure control.
We are doing what we can, with a mournful yet empowered heart, to make a difference in Chelseaâ€™s life and every other childâ€™s life that is affected by Lafora. What these children have lost should not happen to any other child. No parent should have to wait years for a diagnosis only to hear, â€śIâ€™m sorry, there is no cure.â€ť It is our dream, our wish and the reason for our existence, that one day when a child is diagnosed with Lafora, that instead of hearing the word fatal, parents will learn there is a treatment.
Last year, at our first fundraising event, Dr. Escueta of UCLA, stated in his 20 years of Lafora research no one had ever raised funds to support this work. He also mentioned that if medical research funds were made available, it is believed a cure could be found within a few years.
Please join us for the Premiere of The Chelseaâ€™s Hope Documentary Film, meet the researchers and participate in keeping hope alive at our second annual fundraiser September 26, 2010 at the Blackhawk Museum.
Chelseaâ€™s Hope brings hope to many and, is indisputably, making a difference for children suffering from Lafora.
To learn about Lafora, read about our children, make your donation, and attend our event, go to www.chelseashope.org.