Rare form of epilepsy can cause 70 seizures a night

BAY VILLAGE, Ohio - The seizures started when Jordan Lyles was just six months old.

"It was horrific because I had never seen a seizure before," said Paula Lyles, Jordan's mother.

It wasn't until she was 10 years old that Jordan was eventually diagnosed with a progressive form of epilepsy called Dravet syndrome .    

Jordan is 15 now and her mother is always at her side, even sleeping with her since the seizures often occur overnight.  The disorder has robbed her of many of her motor and communication skills.

There are numerous potential triggers for a seizure. The most obvious triggers are a sudden change in temperature and illness, which can spike a fever.

It's a difficult life for the Lyles family, but they make it work. Paula said Jordan is happy and enjoys activities like swimming and riding her specially designed therapy horse to strengthen her core muscles.

Local fundraiser works toward a cure for Dravet syndrome

Working with the International Dravet Syndrome Epilepsy Action League (IDEA League) , Paula is organizing a fundraiser to help raise awareness of Dravet syndrome.

'Twas the Night Before Christmas
Friday, July 23, 2010 5:30-11:30 p.m.
Fountain Bleau
635 Miller Road
Avon, OH 44012

The miracle Jordan's mother says dramatically helped her little girl

Paula says a visit to Dr. Issam Nemeh , a medical doctor known internationally for his healing power,  changed Jordan's life.  Paula says she watched her daughter physically change as he prayed over her. She says Jordan's quality of life improved as many of the seizure triggers like sunlight and patterned wallpaper just disappeared and never came back.

It was also Dr. Nemeh's wife, Kathy, who convinced Paula to take her daughter off a special diet which had been very time consuming and restrictive.