Redefining the words courage and determination, 10-year-old Olivia Davis Marco Island, submits herself to a radical brain operation at Miami Children’s Hospital on Monday.
For the sweet-natured, gifted Tommie Barfield Elementary student, it represents a chance at banishing ever-increasing attacks of epilepsy that have plagued her — and forever changed the lives of her family — following her first episode three years ago.
Since then, Olivia has undergone four brain surgeries at the hospital to remove “seizing tissue” suspected to be responsible for her condition, but with limited success.
Rendered partially paralyzed on her left side, and still in the process of recovery and rehabilitation from her most recent surgery about a year ago, Olivia is to undergo a hemispherectomy, a procedure that essentially removes half of her brain.
Putting a name to it
Olivia has Rasmussen’s encephalitis, a rare form of epilepsy said to affect very few of children.
Risk probabilities of a hemispherectomy are increased paralysis on one side, vision impairment in her left eye and the specter of double-daily rehabilitation for at least two years.
But, significantly, studies have found no striking long-term effects on memory, personality, or humor after the procedure, hence there’s great optimism in the family.
And optimism, as well as huge dollops of give-and-take, and indeed humor is what has kept mom Stephanie, dad Bruce, sister Natalie, 12, and brother Ever, 4, functioning as the strong family unit they are.
At the height of their family ordeal, however, one sour incident left Bruce and Stephanie speechless, and staff at Miami Children’s Hospital outraged.
One evening just days before Olivia’s second surgery the Davises received a call from a social worker who said she was investigating a claim of abuse.
The allegation was that the Davises had been pushing Olivia too hard academically, which (allegedly) was causing her frequent seizures.
Once they’d overcome their anger, the Davises quickly quashed the “investigation” with the help of statements from Olivia’s infuriated medical team.
Significantly, too, the social worker resigned forthwith.
“But to some degree the damage was done,” Bruce says. “It stays on the books. You can’t eliminate it even if the claim is unfounded”.
Stephanie continues “That incident keeps pointing back to the fact that people, even educated ones are horribly uninformed about a disease (epilepsy in general) that affects over 3 million Americans.”
Olivia’s first episode happened ironically on her seventh birthday, when dad, mom and the two sisters were in Guatemala to adopt Ever.
“We had no idea what it was,” says Stephanie. She was trembling and shaking, and we thought it was related to a cough she had.”
Back home on Marco, and a couple of months later, more intense seizures occurred, and the Davises immediately took their child to Miami Children’s Hospital.
Neurologists at the hospital tried anti-convulsants and IV infusions, which were effective to an extent, but the upshot was a biopsy that led to the first of four brain surgeries so far.
The third one required extensive post-operative rehab for Olivia, so the Davises rented a townhouse in Miami for a year to facilitate their child’s treatment and rehab.
Forward, then a setback
After the most recent procedure, in July 2008, Olivia had improved enough to return to school, but by January of this year had again deteriorated.
“She had a seizure totally different from the others we’d seen,” Stephanie says. “She couldn’t talk. She was unaware of her surroundings.”
Back at the hospital, MRI’s and a video EEG “put the last piece of the puzzle in place” with neurologists being able to put a name to Olivia’s disease.
During the protracted and all-consuming four-year ordeal, Stephanie says equal doses of love, determination and humor won through.
“She is the strongest, funniest and most amazing human I’ve ever met in my life,” she says. “She’s just totally sunny side up the whole time.
“In fact, her friend Pat (Dean, coordinator of the hospital’s comprehensive epilepsy program) told me she wished she could be more like Olivia.”
Strength from all
Stephanie says besides her husband’s rock-like dedication, Natalie and Ever have been veritable pillars of strength.
“It’s been a lot of character building for the other kids,” says Bruce.
“Natalie constantly reassures her, and Ever has learned to stop her from falling when she has episodes. He catches her and holds her head off the ground, just like he’s seen us doing with her.”
Through it all, Olivia is concerned about more than just herself.
She wants to drum up support for epilepsy research, and for that reason has created a firstgiving.com/oliviadavis Web site to accept donation for a walk taking place in Miami on May 3.
Her aim is to raise more money than Pat Dean, whom she beat last time around as well in the process of raising the most in the entire Miami-Dade county.
Olivia will likely be unable to attend the May 3 even herself, but really wants to, says Stephanie, so she’s not ruling it out.
Need for knowledge
Bruce endorses Olivia’s passion for epilepsy research fund-raising.
“It’s a misunderstood condition,” he says. “It’s a mysterious disease, unlike leukemia or heart disease, and needs research funding.”
“This is part of life,” Stephanie says of the past few years. “An enormous part that has been extremely difficult and has changed every aspect of our lives.
“But we’re eager to have the surgery, get Olivia out of ICU and get her stable enough to start the greatest recovery ever.”
Both parents were reluctant to talk about possible help with medical costs, which are daunting to the extreme.
Surgery costs aside, their insurance, for example, will pay for just 20 rehabilitation treatments after Olivia’s April 20 surgery.
But, twice-daily sessions will be required for at least two years thereafter.
Reports on Rasmussen’s Encephalitis state that the procedure is almost exclusively performed in children because their brains generally display more neuroplasticity, allowing neurons from the remaining hemisphere to take over the tasks from the lost hemisphere.
This likely occurs by strengthening neural connections which already exist on the unaffected side but which would have otherwise remained small in a normally functioning, uninjured brain, and minimal changes in cognitive function overall.