COCHRAN, GEORGIA: Sasha Edge remembers one of the most frightening days of her life as a parent vividly. It was the day that her daughter, Riley, then two years old, took a nasty fall.
And the paramedics were there.
“Riley was staying with her grandmother. She had fallen as most toddlers do, but was not acting herself,” Sasha told The Murphy Gazette. “My mother-in -law mentioned the paramedics where there, and that’s when I completely panicked.”
She said, “I asked to speak to one of the EMTs. He told me he believed she had a seizure, but that she was fine, alert and talking.”
The suggestion was that Riley get to a pediatrician as soon as possible. “Mike and I made it from Robins Air Force Base in Warner Robins to Cochran in about 20 minutes,” Sasha said of she and her husband. “We arrived to pick her up and she was fine.”
added, “As I was walking to the car, she had another seizure in my
arms. We took her straight to the emergency room at Bleckley Memorial
Hospital, because we had no clue what to do, how to respond to any of
this … it was all new to us.”
“So at the ER, she had another seizure, and the medical team decided to transport her to the Children’s Hospital in Macon, where tests, tests and more tests were done, and it was determined she has epilepsy”
Sasha said, “She has been diagnosed with three types of seizures – grand mals, petite mals, and myoclonics. Her current doctor informed us several years ago that an abnormal gene was discovered that makes people more susceptible to have seizure for the type of epilepsy she has.”
“They tested Riley and she has the gene. The doctor tested me, her dad and her brother, Ty, later and discovered that Ty and I are carriers,” she said. “But what the geneticists don’t know is what environmental factors caused her to go haywire.”
Sasha paused. “I was scared at first … I didn’t want to let her out of my sight ever. Then, I became mad, I questioned everything. Why her? Why not me? What did I do, what did she do, what did we do that this baby girl has to have this medical condition?”
“I realized this is the way she was made, these are the cards we are dealt and we are going to play them.”
According to Sasha, Riley has been on medication since she was two years old. “Everyday since January 2005 she has taken medications. We have also tried the modified Atkins Diet (similar to Keto) that doctors use to treat epilepsy to help control some of the seizures.”
She said, “The diet worked for about nine months, then she started back having seizures, and they determined it wasn’t working. They weened her off, but she has always been on medication.”
Riley is in her last year of high school and is 17. “ I honestly believe in her mind the world is hers! But she will have to take meds the rest of her life, continue medical testing, doctors appointments and just those kinds of things,” Sasha explained.
“In the beginning it was tough, because this was so new to us to include the medications,” she said. “Then I started researching, reading blogs, reading medical journals, looking at types of seizures, medications, and basically educating myself on this condition instead of being afraid of it.”
Sasha said, “ We started asking all the doctors we saw questions, then questioned their answers. The anticonvulsant medication has some pretty crazy side effects . . . mood swings, aggression, depression, drowsiness, nausea, weight gain, hair loss, loss of appetite, and the list goes on and on.”
“And we have dealt with all of them, and deal with some of them today. But, this is her normal, she doesn’t remember a time on this Earth when she didn’t have them. “
“This is our normal. She did go through a rough patch where she would get down, and didn’t want to go to school, because she was scared she would have one (a seizure) there, and the kids would make fun of her.”
Sasha said, “We have always told her that we are not going to be sad about this condition, and that we will embrace it, and do what we do, and never ever let it be a crutch.”
She said that to get through the tough times, she has said “lots of prayers.”
Riley will be attending Middle Georgia State University, and play softball for the Lady Knights. In spite of her condition, Sasha and Mike’s little girl has proven to be a good softball player through the years.
As per advice for parents going through similar things with their own kids, i.e. dealing with crisis or illnesses, Sasha paused. “My advice would be to educate yourself, and to find a doctor that will work as hard for your child as you would. Fight for your children no matter what!”
Sasha smiled when she as asked to define hope. “That is a good one. Hope to me is approaching circumstances realizing that the proverbial glass is always refillable.”
And that is good news too, and aren’t we thankful?