Amelia Blackwell a typical teenager despite dealing with epilepsy daily
Amelia’s Seizure Stoppers
On Facebook: www.facebook.com/AmeliasSeizureStoppers
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PO Box 347
Silverthorne Colorado 80498
Checks Payable To: Amelia’s Seizure Stoppers
It only takes a moment for someone’s life to change. Summit Middle School student Amelia Blackwell doesn’t actually remember her life-changing moment, but she is reminded of it now nearly every day.
Three years ago, Amelia experienced her first seizure while attending her fourth grade class at Dillon Valley Elementary School.
“I remember waking up on the gurney, that’s all I remember,” she said of the event. She was taken to the hospital, where she met her parents.
“We thought that sometimes you just have a seizure, that’s quite common actually,” said her mother, Rachel Blackwell, “and then she subsequently had several more over the course of the next 48 hours and was diagnosed with epilepsy.”
Epilepsy is a medical condition causing seizures, which happen when sudden, strong surges of electrical activity occur in the brain, lasting from a few seconds to several minutes and affecting a variety of mental and physical functions. According to the Epilepsy Foundation, epilepsy and seizures affect nearly 3 million Americans of all ages, and 10 percent of the American population will experience a seizure at least once in their lifetime.
After her diagnosis, Amelia started taking medication to control her seizures.
“We thought control was no seizures,” Rachel said, but what it actually meant was fewer seizures, in general, and of a lesser variety. “We thought ‘controlled’ was seizure free, and that wasn’t what she was. She’s never been seizure free.”
Now, over the past three years, Amelia and her family have adapted to live with her epileptic condition. And it hasn’t been easy.
“One of the biggest side effects with Amelia is she’s very fatigued,” Rachel said.
Recovery from a seizure, even a small one, can take several hours, during which Amelia usually sleeps. Recovering from a severe tonic-clonic seizure (also known as a grand mal seizure) can take 24 hours or longer. This affects Amelia’s daily activities, most notably, school. Some days she’s too tired to attend a full day, or at all. Others, she has to come home early after experiencing one or more seizures.
“It’s always a goal to make it to Friday,” Rachel said. “There’s always a lot of high-fiving in the car on Friday if she’s gone the whole week.”
Difficult though the seizures and their after-effect may be, Amelia still does her best to keep her life as normal as possible.
“I seized yesterday (at school) but I stayed all day,” she said with pride.
Though her seizures and fatigue keep her from participating in afterschool activities, she enjoys playing the violin in band, attending language arts and history class, as well as the daily social interactions of the typical seventh grader. Her favorite color is purple, evident from her phone to her dress to the purple bow perched jauntily on her head.
“I have a lot of friends. I hang out with them, we play card games at lunch,” she said.
Amelia’s perseverance in face of these obstacles has been noted
“She’s incredibly positive. She doesn’t let it bring her down,” said Molly Kelly, Amelia’s language arts and humanities teacher. “She’s still just a normal seventh grade girl, and as if middle school isn’t hard enough, she has this to deal with as well. She’s a very enthusiastic student, and she’s a role model for the other students. She has amazing perseverance. She’s stayed on top of her work even if she has to go home early and come in late. She’s just a really good student.”
The condition has impacted Amelia’s family as well as herself. Just before she was diagnosed, Rachel had gone back to school for nursing, which meant she had plenty of resources and people to turn to with her medical questions. Though she had seen people have seizures before, watching it happen to her daughter changed everything.
“It’s (one thing) to watch it, it’s another thing to be involved,” she said.
This was also the first experience with epilepsy for Amelia’s father, John.
“I had never seen it or knew anything about it,” he said. “Her first seizure, I was dumbfounded; I didn’t know what to do. Quickly learned, though.”
The whole family learned what to do in case of a seizure, even Amelia’s younger sister, 11-year-old Caroline, who pulled Amelia out of a swimming pool during a seizure episode.
“She’s our fourth grown-up in the house,” said Rachel, of the way Caroline has handled her sister’s new challenges.
Amelia has had a lot of adapting to do, which has been helped by attending the Jason Fleishman Summer Camp, held in Estes Park for children dealing with epilepsy. It’s one week where epileptic kids get to participate in fun activities like horseback riding and ziplining while meeting peers dealing with the same issues.
“I made so many friends,” Amelia said. “You feel like you’re so alone, but at the Fleishman camp you don’t feel alone because everybody there is the same.”
Amelia’s medication had been doing a decent job of controlling her seizures until last December, when a stomach bug caused her epilepsy to kick into overdrive. She experienced several seizures continually through a 24-hour period, “and each one was getting longer in duration and harder to get her to come out of it,” Rachel said. “That has started us on the journey we’re on right now.”
After that episode, Amelia went through a series of tests to determine if she would be a candidate for brain surgery to control her seizures. In April, when she went for more tests, she experienced at least 15 seizures in the course of 15 minutes, while hooked up to EEG (Electroencephalography) monitors. This convinced doctors that she could be a candidate for the surgery.
The surgery is now planned for January, and requires three separate steps. The first step will map Amelia’s brain to determine which lobe is affected by her seizures. The second step will map the specific lobe where the seizures are occurring, and the third will be a resection of that lobe, with the goal of ultimately stopping the seizures.
There’s a lot of uncertainty in the procedure, however. For example, if the first step finds that the seizure activity is not limited to a single lobe, but generalized throughout the brain, the process will end there. When the surgery will take place determines on how long it takes for Amelia’s doctors to receive the specific information they need before proceeding, which may take several weeks. Doctors told the family to expect anywhere from six to 10 weeks in the hospital, plus additional recovery time for when she returns home.
Both Amelia and her parents are nervous about the upcoming surgery, but hopeful that the result will be a positive one for Amelia, perhaps even making her seizure-free one day.
“I’m going to miss everybody!” Amelia exclaimed, of the time she’ll have away from family and friends.
Fortunately, those family and friends have rallied alongside the Blackwells. Rachel and John have lived in Summit County for 18 years, and now that support system has embraced them.
“It’s nice to know we have that kind of structure. Our friends have definitely been really helpful and very supportive,” Rachel said.
The family has also been working to raise awareness of epilepsy. Both Amelia and Caroline have given presentations at their school, and the family has set up a Facebook page and a Caring Bridge page for Amelia, called Amelia’s Seizure Stoppers.
“We’re trying to figure out how we can raise awareness and make this something we can be productive with,” Rachel said.
Friends also set up a donation account with First Bank to help the family with medical costs.
“It’s hard,” said Rachel. “Everyone (asks), ‘What do you need? What do you need?’ and you just don’t know. I said, positive energy, whatever it is you do — prayers, positive energy, that kind of thing.”
Until the surgery in January, the Blackwell family plans to have a quiet holiday season of celebration with family and friends, enjoying their time together.
Amelia’s irrepressible excitement shines through even these modest plans.
“We’re watching the ball drop!” she exclaimed. Her goal is to stay up all night.
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