A Retreat From The Ordinary: A Mother's Tale

By Jenna Martin
Special to EpilepsyUSA
Posted: August 3, 2006

"Mommy, why am I different?" is a question Cynthia Folio's twelve-year old daughter Lydia asks her on a regular basis. A question, which she admits she does not have an answer to, and for one weekend, at an Epilepsy Foundation camp in Southeastern Pennsylvania, she doesn't have to.

Folio has participated with her daughter at the weekend retreat camp for the past two years. This summer will mark their third summer at the retreat. "The great thing about the retreat is that Lydia is able to develop a small degree of independence from me. Last summer, she slept in a girl's cabin away from me and I stayed in a parent's cabin." Folio also believes that Lydia benefits from the camp experience because, "Lydia gets to see other children taking seizure medications and gets to meet kids who have some of the same problems. At school she always feels different, but at camp she feels less different."

Camp is not only a chance for Lydia to socialize with her peers, but an opportunity for Folio as well. "Besides the emotional support you receive from the other parents, there is also the practical side, the information and advice you get, such as how to fight for what you need in the school system and with healthcare. You learn mostly from other parents what books and resources are out there," said Folio.

Although Lydia is able to identify with her peers at camp, she still remains a minority due to the severity of her seizures as well as Tuberous Sclerosis Complex.

"Kids at her camp have considerably less frequency of seizures, whereas Lydia can have five to six a day. In fact, last summer there was only one boy who had to wear a helmet because of drop seizures," said Folio.

As defined by the Tuberous Sclerosis Alliance, "TSC is a genetic disorder that causes benign tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs." TSC is a genetic disorder, and is often a result of a genetic mutation over which a parent has no control. Often TSC is first recognized in children who have two neurological symptoms-epileptic seizures and or varying degrees of mental handicap.

Unlike many fearful parents, Folio is not afraid to send Lydia to camp by herself. Unfortunately, the community they live in is unable to accommodate Lydia due to the lack of one-on-one supervision and the severity of Lydia 's seizure disorder.

"Lydia has had so many barriers and so many people and organizations say 'NO,'" Folio said. "If I can't get her into an epilepsy camp, by herself, at age 12, how will she ever be independent?"

Her question hangs in the air along with her daughter's. For now there is no answer. There is hope, however, as Folio and her daughter look forward to spending a weekend together at camp, "Lydia is a very loving, compassionate and special person, we are very lucky."