Teen with rare brain tumor uses epilepsy to help other sufferers

Written by Betty Kwan for CNN

Falling down stairs can be terrifying for anyone. For six-year-old Avery DeVita it was especially scary, as the Glasgow-based blogger, food writer and musician ended up with a concussion. Avery was hit on the head by the second or third brick out of a building as she ran with her friend to school. In the end, a doctor diagnosed Avery with a mild concussion after they took x-rays of her head. The episode took place in June 2017, but Avery felt her symptoms last a lot longer.

In October, Avery started a campaign called “Oyster Brain,” which is seeking to spread awareness of epilepsy. The campaign, which is starting in June 2019, will donate 100% of the money raised to the National Epilepsy Society to support research for new treatments and improve patient care.

Avery (far right) is pictured with her mum, Heather, and little brother, Archie. Credit: Courtesy Avery DeVita

Despite having epilepsy since birth, Avery’s seizures had never been life-threatening. In fact, two months after the concussion her seizures peaked. By the time she was four years old, Avery began experiencing weakness in her legs and arms. After collapsing and landing in hospital, the hospital diagnosed Avery with epilepsy, sent her to a specialist in New York, and placed her on a special diet of dried curd and root vegetables.

“When I first started the diet, it changed my life completely,” Avery told CNN. “Everyone thought I was a lunatic, but I found it really made a difference. I became more confident, and I could go swimming without hurting myself.”

In April 2018, Avery underwent successful surgery for her T2DIPG neuroblastoma (a neuroblastoma type of cancer). Her mother recalls feeling unsure of how she would respond to her daughter’s illness after Avery had her neuroblastoma removed in April 2014. But, there was little doubt that Avery’s daily diet of fried dishes had contributed to her medical condition.

Follow Avery’s journey on her blog. Credit: Courtesy Avery DeVita

“It’s like it makes things so much worse,” Heather said. “A lot of people struggle to have a successful cancer treatment if they’re not on a nutritious diet. I remember being very worried at the time, but then it was so obvious that the diet helped. The things we eat can make a huge difference.”

For many, a thyroid condition and surgery to remove three-quarters of Avery’s skull has made her very different. When she wakes up, Avery sometimes has no awareness of where she is and it’s difficult for her to distinguish between objects in her room.

Avery didn’t realize that she had epilepsy until she was 12 years old. She remembers having a moment of panic while on a paddle board with her dad, and she lost all vision in her right eye. Her mother warned her not to look directly at the sun.

After spending a week in hospital following the incident, Avery came out of the hospital with her vision completely restored, thanks to a near complete face lift. When she woke up, she asked to go on a lunch date with her father. Her mom invited Avery to eat a salty snack. After tasting the snack, Avery says she looked out and was astonished to see that her whole face looked smaller, for the first time in her life.

“I didn’t even know my head looked small in the picture!” Avery exclaimed when she looked at the photo. “This is what my new face looked like before the surgery!

Avery visits her Mom one last time before starting her college in New York. Credit: Courtesy Avery DeVita

Fast forward four years, and Avery, who has no idea when or if she’ll get the opportunity to have another surgery, is thrilled with her new look. Once she heads to college in New York, she plans to make a video series documenting her experiences going from a normal teenager, to college student, to a professional musician.

“I’m really excited for the future, but I also want to make sure that I’m taking care of my brain,” Avery said. “I’m really thankful for the support of the food industry, and the beautiful things that I’ve been able to eat for the past four years.”

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