Kimberly Skriba's 9-year-old son, Ryan, has a rare form of epilepsy - there are only six known cases like Ryan's in the state of Georgia.
Ryan experienced his first seizure when he was just 8 months old. When he was 3 years old, his seizures worsened, and he lost the ability to talk and was unable to learn like other children his age. He was diagnosed with Dravet's Syndrome in May 2007, when he was 8.
"I did not know of Dravet's until my son's doctor did some more research after extensive testing to see if he was a candidate for surgery," said Skriba, who has made it her mission to raise awareness of her son's condition to help parents whose children may also be suffering from the illness. The Auburn resident was named to the Board of Directors for the International Dravet Syndrome Epilepsy Action League in August. The IDEA League is a volunteer-based partnership of parents and professionals.
"What the IDEA League is trying to do is spread the awareness of Dravet's to help prevent delays in the correct treatment for these kids," Skriba said. "These children will have to live the rest of their lives with someone caring for them. The earlier the diagnosis, the better the outcome, which we are hoping for."
A child who has Dravet's Syndrome, which is caused by a gene mutation, usually begins having seizures within the first year of life due to fevers. Even when the fevers subside, the seizures continue. Those with Dravet's Syndrome - named for the French doctor who first described the condition in 1978 - do not respond well to medication, and Skriba said many families have to look outside the U.S. for medicine that eases the seizures but is not approved by the FDA.
Ryan's condition causes him to have an average of 40 seizures a month. The illness - or the medication Ryan takes to combat the seizures he has - has led to numerous disorders, autism and learning disabilities, and Ryan has been approved by the Make-A-Wish foundation to receive a seizure alert dog, which will alert Ryan's family to the onset of a seizure, as well assist with the autism.
"I had the most wonderful dreams for my son before his diagnosis with Dravet's," Kimberly said. "I just have new ones now. As long as he wakes up breathing every day and he has a smile on his face, my dreams will come true."
For more information on the IDEA League and Dravet's Syndrome, visit www.idea-league.org.