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Hundreds march along S.F. waterfront to raise awareness of rare brain disorders

Hundreds march in S.F. to raise awareness of rare brain disorders
Hundreds march in S.F. to raise awareness of rare brain disorders 02:50

SAN FRANCISCO (KPIX) -- Despite rain and cold temperatures on Sunday, several hundred people set off from San Francisco's Crissy Field on the Aneurysm and AVM Foundation Walk, an annual event to raise support and awareness of rare brain disorders.

Most people have never heard of arteriovenous malformation -- AVM -- and that's exactly why those who must live with the condition were marching.  

"It's called a rare disease.  It's only rare until it happens to you," said Raylene Lewis, whose son Kyler is living with the disorder.

An AVM is a tangle of veins and arteries in the brain, like a bird's nest, that forms randomly in some developing embryos.  Kyler has one in his head the size of an egg but he didn't know it until it hemorrhaged when he was 15 years old.  Now, he has to be careful not to do anything that will raise his blood pressure.

"If it ruptures again, it could be very detrimental -- um, devastating -- it would be really, really not good," he said.

Now, at age 18, Kyler has an amazing team looking after him. There's his mother, his best friend Hayden and even his service dog Sam, who is trained to sense when Kyler might be having a seizure. Then, there's his kid brother Kayden, who must deal with something no 12-year-old should ever have to face.

"I have to say my prayers at night because I never know when my brother could stop breathing or have a seizure," Kayden said.  "I make sure to always try to hang out with my brother and spend as much time as I can with him. Just make sure we live to the fullest."

The Lewis family lives in Texas but they're in San Francisco because this is where the hope is.

"When he received the diagnosis, there really wasn't anybody in Texas locally who could help us," said Raylene. "So, we went searching for a cure."

They found it at UC San Francisco.  The hospital has become a leader in the treatment of rare brain vessel disorders. Pediatric neurosurgeon Dr. Nalin Gupta just finished a set of surgeries on Kyler using a so-called "gamma knife" to focus radiation on the tangled mass in his head.

"His particular AVM was complicated because it was large and it was in a fairly important part of the brain," Dr. Gupta said.

The disorder is so rare and hidden that even a lot of doctors are not aware of it. Sunday's walk was meant to raise awareness, not just with the public but among the medical community as well. Dr. Gupta said most pediatricians may see only two or three cases in their entire career so they may not understand what they're dealing with.

Kyler's condition was only caught because of the hemorrhage.  Luckily, he survived and, if the surgery works as expected, he may be able to live a normal life again

"I will know that I no longer have this thing in my head and I'm free to do the things I want to do," he said.

And those who love him -- including Sam -- can rest a little easier.

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