Local family hopes operation on East Coast will help autistic son
Flight may put man, passengers at risk
Last Updated: 74 days ago
SAN DIEGO - A local family who has struggled for decades dealing with their autistic son's life-threatening seizures said their last hope to help him could put a plane full of San Diego travelers at risk.
Jan and Steve Brown said they are desperate to help their son Kyle. Traditional medications have failed and his epilepsy can turn violent.
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Now, a surgery that could help him is across the country and there does not seem to be a way to get Kyle there safely.
"Right now, we feel like we're living with a time bomb," says Kyle's mother, Jan Brown.
For the Browns, it's 60 seconds to three minutes of horror watching Kyle spit up his own blood and choke for air.
"He stops breathing, he turns from purple to blue; he looks like a drowning victim," says Jan.
The Browns tell 10News reporter Natasha Zouves, Kyle's seizures are violent enough to cause injuries to both him and those around him. Trying to keep him from hurting himself has broken his father’s lower back and caused his mother to undergo five surgeries.
"The seizures can be so violent," says Jan. "They dislocate his shoulders … they fractured them,” said Jan.
It's a daily reality for the Brown family. Their little red-headed boy, who at first just seemed sensitive to noise, is now a full-grown autistic man. Kyle Brown weighs 300 pounds and is well over 6 feet tall.
In their Clairemont home, there is evidence of his severe autism and epilepsy in every room, including locks on the refrigerator and baby monitors everywhere. Jan tells 10News what it was like to hear Kyle starting to suffocate in the middle of the night:
“I heard him make that choking sound on the baby monitor," she says. "I went into his room and sure enough he was face down in his pillow having a seizure. And I thought, 'Oh my god, what if I didn’t wake up?'”
The violence of the seizures has left Kyle virtually homebound and has made travel nearly impossible.
"He tries to jump out of the car. The last time we went for a walk and he had a seizure, he tried to run into the street and he's 300 pounds," says Jan.
Kyle's neurologist Dr. Abraham Chyung at the Scripps Clinic says his only hope may lie across the country. A breakthrough surgery called laser ablation targets a specific area in the brain associate with the seizures. And since it uses a laser instead of a scalpel, it doesn’t come with the risks traditionally associated with brain surgery.
“We’re talking about risks like losing vision, verbal ability or becoming more aggressive,” says Chyung. “In Kyle’s case, because he is already autistic, losing speech would be devastating.”
Laser ablation has shown some astounding results. Chyung says it has taken some patients’ seizures down to zero percent. But it is offered in very few places in the country. The issue the Browns now face is flying Kyle to New York for testing and then the operation.
It's a trip that could be very dangerous.
“When he’s not on an airplane, Kyle has broken limbs and injured himself being at home and having seizures. With his parents being around him and trying to protect him… they have suffered injury themselves,” says Chyung. “So you can imagine in a small cockpit of an airplane, what a danger this could be.”
Chyung adds there is a risk that Kyle could die suddenly if he has a seizure on board. Kyle’s mother shares this fear.
“For him to be flying at this point in his life is absolutely dangerous. I’m afraid he’ll break his neck, put a hole in the plane or hurt other passengers,” says Jan.
But she said no matter the risk, it has to be done. She and her husband are getting older. So is Kyle and his seizures are getting worse. The procedure is their last hope.
"I’m looking forward to going on bike rides with him again. I’m looking forward to getting back to a normal rhythm of life with him again, and being able to do all the things he can do,” says Jan.
The Brown family thought they might have found a solution through a company called Angel MedFlight. The company flies private jets with EMTs, nurses and medication on board, but it comes at a high price if it’s not covered by insurance.
The Brown’s insurance provider, Anthem Blue Cross, has already rejected the idea twice. 10News called the company. In a six page letter, the insurance provider says the flight is outside of Kyle’s contract.
The Browns plan to take a commercial flight out of San Diego this weekend.
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