Chelsea’s Hope Lafora Children Research Fund initially began as a means to share our story with family and friends about what was happening in the life of our daughter, Chelsea. Experiencing her first grand mal seizure at age 14 ½, one month before her 8th grade graduation, our life and everything in it came to a screeching halt. Our family entered an unknown world of fear, devastation, isolation, medical emergencies and immense sadness as we watched our beautiful daughter’s vibrant life begin to slip away. Within 6 months of her first seizure, we received the diagnosis of Lafora Disease.As our neurologist spoke these words, “The test for Lafora disease is positive”….all sights, sounds, emotions, and the promise of a future… faded to BLACK.
To be told “There is no cure” and “There is no group to align with for support and guidance” was unacceptable. We could NOT live this tragedy alone. In this modern age of medical miracles…how could this be? We needed others to share our sorrow with, others who could relate exactly what we and our daughter were experiencing and we needed a miracle.
From a normal healthy child, you have to watch your child losing their independence bit by bit. They start to jerk; sometimes so bad they cannot even hold a cup or feed themselves. Cognitive decline sets in. Normal things like reading and writing are no longer possible. They need help to get dressed. They need help to be fed. Sometimes their legs won’t hold them up so they need aid to walk. There is a delay in their verbal reactions…eventually they speak no more. No medication can stop the jerking and anti epileptic medications are palliative and do not prevent grand mal seizures from wracking their bodies. These symptoms, as they are underlying symptoms of the disease, only get worse and result in status epileptus – uncontrolled seizure after seizure. Swallowing becomes difficult and oral suctioning is necessary. Eventually gastric tubes are put in place so that medication and nutrition can be obtained. Wheelchairs, breathing equipment, compression vests, shower chairs, hoyer lifts, hospital beds, and other equipment become the fixtures in our homes to support our children.
Lafora Disease currently receives very little, if any, funding from the Federal Government, in part, because of its “orphan” disease classification. Due to its rarity and difficulty in obtaining diagnosis, it is currently unknown how many children in the United States and elsewhere are suffering from Lafora Disease.
Chelsea’s Hope Lafora Children’s Research Fund is committed to creating awareness, connecting families, funding Lafora research and maintaining HOPE for all our children so that they may have a chance for a future free of Lafora disease.