Queen Creek teen finds treatment that reduces seizures from hundreds a day
QUEEN CREEK, AZ (3TV/CBS 5) — Imagine having hundreds of seizures a day with no relief because no treatment consistently helps. That was the case for one teen in Queen Creek when she was younger, but “Brookie the Brave” is doing much better now, thanks to a special therapy.
“Her body would shudder,” Brooke’s mom, Brittany Miller, said. “Kind of cluster repeatedly where she would shudder, and it would be repetitive all day long, almost 24 hours a day.”
Thirteen-year-old Brooke Miller is known as Brookie the Brave by her family and doctors. She lives with Aicardi syndrome, and it’s incredibly rare. “She’s definitely earned that title,” Miller said.
The neurological condition causes seizures and mostly occurs in girls. The Aicardi Syndrome Foundation estimates there are only 1,000 cases in the U.S. and roughly 4,000 worldwide. Brooke has experienced medical hardship her whole life. She was diagnosed with Aicardi syndrome when she was a few weeks old, and as a baby, she had hundreds of seizures a day. “It was terrifying, you know. No one in my family has epilepsy. No one has a disability,” Miller said.
Brooke also has drug-resistant epilepsy. Miller explains that means medications alone have been unable to get her seizures under control. But one treatment has given her new hope.
“Pre-VNS Therapy, we were calling 911 almost monthly,” Miller said. VNS Therapy, or vagus nerve stimulation, is a medical device that a doctor can program to stimulate the left vagus nerve to prevent seizures before they start and stop them if they do. “We’ve got it to a point where she has less than 10 a day, which I will take that as a win,” she said.
VNS Therapy, coupled with other therapies, made a big difference in Brooke’s personality and overall happiness. “Having the vagus nerve stimulator just kind of woke her up,” Miller said. “She started laughing more, smiling. She was more alert.”
She also said VNS Therapy has given her daughter new opportunities. It’s allowed her family to travel and enjoy the outdoors together for the first time. A few years ago, Brooke was nominated for the Epilepsy Foundation Arizona Youth Honoree of the Year Award. “She got her first and only trophy she’s ever received, and it was just amazing for her to finally have a chance to shine,” Miller said.
According to the Baylor College of Medicine, the average age of survival for those with Aicardi syndrome is around 8 years old, and Brooke will soon be 14. Miller said her daughter has always beat the odds, but that they’ve also accepted Brooke won’t be around forever, so the family cherishes the time they do have.
“I love her so much, and so we’ve just tried our best to give her the best quality of life possible,” she said.
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