Grace, is a lively beautiful two year old girl. She began having tonic clonic seizures at the age of one. In October of 2012, 9 days after her MMR Vaccine she suffered her first seizure in the bathtub. Grace was splashing water when shesuddenly slumped forward placing her face in the water for seconds. The hospital determined it to be a possible dry drowning and released her the next day after observation.
Six weeks later she began to have tonic clonic spasms of her arm. Her seizure activity lasted for approx. 10 minutes. A few days later she was sleeping in the bed with her parents when she began to experience her next tonic clonic seizure. Grace was again transported to the ER and had a second episode that was witnessed by the ER staff. The doctor confirmed that it was a focal seizure and she was admitted to the Hospital on a 24hr EEG and video monitor. She was started on her first of many anti-seizure medications.
A week later Grace began having spasms while sleeping which began subtle and increased in force over time. The spasms would go on continuously for a few hours with her constantly waking up, crying and kicking her feet. It was later determined that the spasms were indeed myoclonic jerks. The myoclonic activity would continue into the day and include absence and drop seizures. She also suffered numerous tonic clonic seizures. Grace would be prescribed two additional anti-epileptic medications with only some temporary changes. The medications are very dangerous to her liver and internal organs. They also made her very sleepy and irritable on a daily basis. Grace was placed on a gluten free diet which did control some of the seizure activity. But Grace continued to have anywhere from 50-200 myoclonic seizures every day and has not had one seizure free day since starting one year ago.
In the spring of 2013, Grace was diagnosed with Dravet Syndrome. A rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, then plateaus and a progressive decline typically begins in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy).
Today, Grace’s family has relocated from New York City to Colorado in search of a little miracle called Charlotte’s Web. The high Cannabinoid, low THC medical marijuana is what they hope will be the answer to their little girl’s pain and suffering.