How my epilepsy is helping others
"My daughter wants the world to know what it's like to be her".
Katherine’s daughter Ella has been having epileptic seizures every 10 to 30 seconds since she was three months old
At five, Ella was diagnosed with GLUT1 deficiency epilepsy – a rare genetic condition that disrupts glucose absorption to her brain and had to start following a strict ketogenic diet as treatment
Now 14, Ella wanted to create a book that would explain to her friends what it’s like to live with epilepsy
She became an author in 2023 when Ella and the Electric Paintbrush: A Positively Charged Epilepsy Tale was published
Katherine Cooper, 31, from Mount Gambia, SA, shares her story below
My daughter Ella came home from school and threw her lunch box on the table. “I hate that my lunch looks different from everyone else’s,” she huffed.
“I know, darling, but you know why we must do it,” I replied.
She nodded glumly, and my heart broke for her.
Ella, 10, had her first epileptic seizure when she was just three months old.
Since then, every 10 to 30 seconds, she has silent seizures where her eyelids flutter, and she goes blank for a few seconds. Using CBD oil and medication has helped ease them.
When she was five, she was also diagnosed with GLUT1 deficiency epilepsy – a rare, incurable genetic condition that disrupts glucose absorption to her brain.
For treatment, she had to follow a highly restrictive ketogenic diet, low in carbohydrates and high in protein and fats.
It meant no junk food or sweet treats. Though it was hard on her, it worked.
She only had terrifying tonic-clonic seizures, where she falls to the ground and stops breathing, when she deviated from the diet.
Before, she was having them every few days.
Once, she stole a TimTam from the fridge, and I had to catch her as she fell the next day. Luckily, she avoided serious injury.
Then, one day, Ella came to me. “I wish there was a book that I could give to my friends to explain what it’s like to be me,” she sighed. “They keep asking questions, but I don’t think they understand.”
“Why don’t you write your own?” I suggested.
I’d met a British journalist, Fraser Morton, at the Epilepsy World Congress in Bali a few years before, and we’d become friends. So, the next time we spoke, I told him about Ella’s idea.
“Will you help us make it?” I asked.
“I’d love to,” he agreed.
Over 18 months, Ella and Fraser chatted on WhatsApp calls. She gave him the ideas, which he wrote into a book.
He then got his friend Sadiq Mansor, who also has epilepsy, to illustrate it.
Finally, at the end of 2023, Ella and the Electric Paintbrush: A Positively Charged Epilepsy Tale was published. It’s about a 12-year-old girl with epilepsy who dreams about becoming a famous artist.
One day, she is struck by lightning, and while she’s unharmed, she discovers her paintbrush has been given superpowers, going off on adventures.
Along the way, she describes what her seizures and restricted diet are like for her.
In November 2023, a box of books arrived.
“Wow,” Ella said, picking one up. “My very own book.”
We had a book launch at Ella’s school, where she signed copies for her peers.
Ella, 14, and I both support the Make March Purple for Epilepsy initiative.
It encourages Australians to have conversations throughout March to break the stigma associated with the condition.
Every 33 minutes, a life is turned upside down by epilepsy. Ours certainly were.
By talking about it and raising funds for advancements in medicine and technology, we’re giving children like Ella hope for a life without fear.
Source: https://www.nowtolove.com.au/news/real-life/take-5/how-my-epilepsy-is-helping-others/