Christopher is Caroline's younger brother and has suffered from epilepsy since he was 7 months old. As a baby and toddler, Christopher was prescribed drug after drug while his doctors tried to control his seizures. His seizures were sudden and unpredictable so Christopher wore a helmet to protect his head from injuries. Christopher developed normally before the seizures started and for a few months after they began. But when his seizure frequency increased to hundreds of seizures each day, his development slowed and then stopped.
The drugs were unsuccessful at controlling the seizures but eventually the ketogenic diet for epilepsy helped Christopher’s seizures become more controlled. While on the diet, he went from having hundreds of seizures a day to having twenty or fewer. Christopher remained on the diet for 4.5 years and then his doctors prescribed drugs again. Once again, the drugs did not help his seizures very much. For the next fifteen or so years, Christopher suffered with very frequent and life-threatening seizures. During this period he stopped walking. He also stopped eating by mouth and had to have a gastric feeding tube inserted.
Christopher is now 27 years old and he still has seizures. For the last few years, his seizures have been milder and less frequent but he continues to have some seizure activity on most days, and prolonged and severe seizures every month or two. He doesn’t walk, talk, or understand language. His life has been profoundly affected by epilepsy. In the U.S., 3.4 million people suffer with epilepsy and worldwide, 65 million people have epilepsy. A few of the possible causes of epilepsy are genetics, trauma, stroke, tumors, and infectious disease, but in approximately 50% of cases, the cause is unknown. While Christopher’s seizures have not been well-controlled in spite of all the drugs and other interventions, many with epilepsy successfully control their seizures by using one or more drugs. Still, up to one-third of those with epilepsy do not get control over their seizures. Research into new drugs and treatments is crucial.
We chose Citizens United for Research In Epilepsy (CURE) because it is vital to fund more research to cure epilepsy. CURE was founded in 1998 by Susan Axelrod and a small group of parents who were frustrated with their inability to protect their children from seizures and the side effects of medication. CURE has raised more than $60 million to fund epilepsy research and other initiatives that will lead the way to cures for the many types and causes of epilepsy.