CHRISTOPHER'S RAINBOW
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Hope for Children With Epilepsy
This is a picture of Christopher at six months. It is one of my favorites because it was taken just before the seizures began. We had no idea how drastically our lives would change. Two months later, the innocence of infancy was smothered by the onslaught of seizures, and our world turned dark.
| Welcome. This website was designed to provide parents and caregivers of children with epilepsy a place to find support, information, and encouragement. Epilepsy is a devastating disease, but there is hope. It is our desire that by sharing our story and experience, that you will come to believe that the storm will subside, and rainbows will appear. |
About 300,000 American children under the age of 14 have epilepsy. Epilepsy is a brain disorder in which clusters of nerve cells in the brain sometimes signal abnormally. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years. For others, it may be a lifelong challenge affecting many areas of life. My son had two of the most rare and difficult to treat syndromes - Infantile Spasms (IS) and Lennox Gastaut Syndrome (LGS). Both are tied to significant developmental delay and physical debilitation. When he was first diagnosed with IS, his neuro told us that we should prepare ourselves for the likelihood of having to institutionalize our child in the future; he probably wouldn't walk, talk or mentally develop. The data available indicated that children with intactible seizures don't grow up to be independent adults. I couldn't find any positive outcomes on the internet. I was in desperate need of a happy ending to the story of a child with Christopher's diagnosis. The more I read, the more I couldn't function; fear of losing my son, mentally and/or physically, kept me from taking action. Only the support of family and friends stopped me from giving up on Christopher, on us, on life. There is a great deal of medical data about epilepsy available (see resources and links), but this site is not about providing you with information you can find elsewhere. My goal for this site is to share my son's miraculous recovery (for today) so that you may have hope, which will give you the strength you need to fight for the life of your child.
