Tomé girl recovers after three brain surgeries; only one seizure
After three major brain surgeries, 12-year-old Alicia “Memmrie” Jacquez, of Tomé, appears to be seizure-free, with only one pre-seizure episode her doctors said could be expected.
She folds up her long, lean frame into a small ball on the couch with her new puppy, Buster.
She’s bored and wishes to be back in school, but that won’t happen until January.
“She’s still enrolled in the online portion of school through SODA (School of Dreams Academy),” said Alicia’s mother, Marisella Jacquez. “I thought because she’s been feeling better during the day, having more energy, that she could do an hour a day or something, but her doctor was totally against it.”
Alicia had seizures, including grand mal seizures, since she was a year old. Back then, the family lived in Las Cruces, and the doctors could not diagnose what was happening to the child.
She has endured years of misdiagnosis and an assortment of treatments and medications, Marisella said.
The family moved to Tomé to be closer to the hospitals in Albuquerque, and earlier this year, Alicia was tested at the University of New Mexico Research Center.
Dr. Bruce Fisch, the director of the epilepsy treatment program, found that Alicia’s brain had two, small damaged areas.
One area was in the hippocampus, a limbic system structure important in forming new memories and connecting emotions and senses.
The other damaged area was in the left frontal lobe.
The news was devastating for the family to hear, but it also gave them a ray of hope that she could be cured, said Marisella.
Fisch thought the damaged areas could be the cause of the seizures, and wanted to open Alicia’s cranium to test for seizure activity.
In July, Alicia started a series of three surgeries. In the second operation, electrodes were attached directly on the surface of her brain to monitor seizures at the damaged sites.
This was the first time this procedure was done on a child at the UNM hospital.
All of Alicia’s medications were stopped, and seizures were induced to see what portion of the damaged areas might be causing the seizures.
“I couldn’t go anywhere,” Alicia said. “The wires would pull my head.”
Her mother couldn’t watch during the induced grand mal seizure, but her father, Pablo, stayed right by Alicia’s side.
“She about jumped out of that bed,” Pablo said. “The first thing out of her mouth was, ‘I had the same seizure as I did when I was a baby.’”
“You feel so helpless as a parent,” Marisella said. “It was just so frustrating, but she made it through.”
In the third and last operation, UNM neurosurgon Dr. Eric Marchand removed the damaged area in her hippocampus, a portion about the size of a quarter in diameter.
Because Alicia is so young, and has had the seizures so long, the healthy portions of her brain have likely taken on the tasks the damaged areas could no longer do, Marisella said.
“They were just giving out seizures, so now without it, she’s never known how she would feel without the damaged parts,” Marisella said. “I can see by her expression she feels better.”
“I feel like I was born again,” Alicia said.
While she convalesces at home, Alicia has taken up painting, making beaded bracelets on a loom, painting ceramics and cooking when she’s not on Facebook with her friends.
All the things her parents would stress out about her doing, they feel more at ease about now, even letting her go out with friends.
Alicia went trick or treating with her friends on Halloween without worrying about having a seizure.
She’s still on oxygen when she sleeps, and sometimes struggles with short term memory, but the doctor said it will improve in time.
Firefighters with the Albuquerque Fire Department gave Alicia an award for her bravery.
“The chief honored her and gave her a hero’s coin for her being such an inspiration,” Marisella said.
When Alicia had her stitches removed, she and her mother stopped by Barnes and Noble. As they were leaving, they were approached by a woman who had also had brain surgery.
“Turns out she had the exact same surgeon,” Marisella said. “She had read about Alicia in the paper. She knew her story. She was so excited to meet her.”
The woman and Alicia were able to share their struggles in recovery. It was comforting for Alicia as well as the woman, Marisella said.
“And then we met Sarah,” Alicia said. “We met her at Michaels (Michaels Arts and Crafts Store). We were walking by and she saw my scar. She had it (a head scar) from epilepsy too, from seizures.”
They still keep in touch on Facebook.
The family is hopeful the worst is behind them now, and Alicia is looking forward to living a normal life.
“I want a boyfriend,” she said.
In January, the plan is for Alicia to attend the School of Dreams Academy, where she will be able to catch up on her studies at her own speed.
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