WILLIAMSTOWN - Carna and Jason White have learned to recognize the onset of a seizure, they know more medical terms than some physicians and now they are on a mission to raise awareness and provide support for others - all for the love of their little girl.
Catie is 2 years old and has been diagnosed with a rare form of epilepsy called Aicardi Syndrome. It is a rare neurological condition that effects primarily girls only as it is believed to be a genetic mutation on the X chromosome.
The syndrome effects about 800 girls in the U.S. It is characterized by full or partial infantile spasms, and lacunae on the retina, as well as other brain abnormalities. Catie experiences literally hundreds of seizures a day, with bending and jerking that can last from seconds to several minutes. She's been on many medications and so far has had two brain surgeries and may be undergoing a third soon. When she was born, Catie appeared perfectly healthy. At 3 months of age, Carna noticed her daughter twitching slightly.
Carna Metheney-White, her husband Jason, little Catie, 2, and big brother Logan, 7, are shown in their Williamstown home. Catie has a rare form of epilepsy. (Photo by Pamela Brust)
"Most people said it's just a nervous tick, nothing to worry about. But I knew in my mommy gut something was wrong. I told my husband and our pediatrician I thought she was having seizures," Carna said.
When people think of epilepsy, they often picture someone writhing on the floor, violently jerking, but that is a Grand Mal seizure. While the twitching and jerking that is an actual seizure may not be quite as dramatic, the seizures are none the less frightening and life threatening. Many children with the rare form of epilepsy Catie was finally diagnosed with don't survive into adulthood, the average live span is 8-12 years. The Whites hope and pray Catie will be that exception.
"We really couldn't have imagined what to expect, what kind of beast we were actually dealing with. When she was first diagnosed, we just thought she could take some medication and control it," Carna said.
In Catie's young life, she and her family have spent many hours in hospitals and doctor's offices anxiously awaiting test results and a doctor to walk into a room with some hopeful news.
"There is a lot of fear because we were told there would be developmental problems, that she might never talk," Jason said.
"We have never given up hope, we just take each day as it comes. I don't want her to miss anything so we try to live as normally as possible under the circumstances," Carna said.
Eventually Catie will probably need a wheelchair and Jason said the lack of facilities for the handicapped in the community makes it difficult. The couple is looking ahead to a time when they may need to move to a more accessible home with less stairs and getting a conversion van for their daughter.
"She has to take a lot of medication. They keep changing it and there are side effects, we have to really watch everything all the time," Jason said.
Both Carna and Jason work full-time, nurses stay with Catie during the day while they are at work. The couple has a son, 7-year-old Logan.
"At first he didn't understand, he just saw that we were crying a lot and seemed to be sad all the time, but he's really wonderful with Catie," Carna said. "He makes sure we know if she starts a seizure, he also knows what to watch for, he knows we have to time the seizures," Carna said.
"He's very good with her, he has a wonderful sense of humor and he reads to her every night," Carna said. "We do our best to make sure he has as normal a life as possible," Carna said, adding it was difficult to explain Catie's condition to her brother. "We described it to Logan as a kind of thunderstorm going off in her brain," Carna said.
The family has multiple hospital stays. Catie has vision problems and will continue to have developmental problems. There is no cure. The couple relies on their faith and finds strength in each other.
"Jason was my rock. In the beginning I just fell apart. But we work well together. Catie had to have shots and I just couldn't do it, Jason would do that. We make a really good team," Carna said. "We have a wonderful family."
Jason said although the family has good insurance, there were a lot of out of pocket expenses that were not covered, so they started a 5K run in Beaver, Pa., Jason's hometown, to raise funds to help cover the expenses.
"We got so much support we used the event not only as a fundraiser, but also to help raise awareness about epilepsy," Jason said.
The race was such a success, they were able to exceed their goals and decided to contribute the remaining funds to the hospitals. The doctors make sure patients who have epilepsy and don't have insurance or adequate insurance receive help from the fund.
During November, the family also delivers care packages to the children on the Neuro floors of Nationwide Children's Hospital as well as Pittsburgh Children's Hospital. They started the Catie White Epilepsy Assistance Grant at Nationwide Children's Hospital to help families pay for medical expenses or equipment for their child.
"We just want to make sure the families know they are not alone. As hard as it is to see your children struggling with this, it helps to know there are others out there who know exactly what you are going through," Carna said.
The family has developed a website for the foundation at www.catiewhite.com.
"We try to live in the moment, day to day, the future is scary," Carna said. "It's important for parents to become advocates for their children. You have to fight sometimes, be assertive, don't be afraid, if you think something is wrong, keep pushing until you find out what it is," Carna said.
"She's our precious princess. Catie is an amazing little girl who has had to fight every day of her life," Carna said.