Sheri Burdine remembers the day she received the phone call from a woman named Ericka in El Paso, Texas, seeking help for Baby Klaus.
The 10-month-old had been diagnosed with hydrocephalus -- commonly known as "water on the brain" -- and his head had grown to three times normal size. Local doctors had sent him home to die, offering no further care.
"When they found me, the family was in turmoil," said Burdine, who is founder of Hydro Angels Over Texas, which provides support for those dealing with hydrocephalus. "I remember like it was today hearing that frantic, desperate voice. 'Please help my brother's family.'"
Even Burdine was not prepared when she met Baby Klaus. A normal head circumference at birth is 35 centimeters, but 10 months after his birth, his was 104 centimeters.
"It was one of the worst cases I had ever seen -- even video from children in Ethiopia or Cambodia," she said.
About 1 million Americans have hydrocephalus, according to Angels Over Texas. It is a complex condition in which too much cerebrospinal fluid, a clear liquid that normally surrounds both the spinal cord and the brain, builds up and collects in the cavities of the brain.
But today, thanks to Burdine, Baby Klaus, whose parents want to protect his privacy, is getting treatment at University of Texas Health Science Center in San Antonio.
There, in a series of operations, doctors will drain 30 pounds of fluid off his brain and then do complex reconstructive surgery, including taking apart the baby's skull and putting it back together again.
The baby's father, who did not want to be identified, called his son a "fighter and warrior."
Last week, Dr. David Jimenez, a pediatric neurosurgeon, successfully performed the first procedure to relieve some of the pressure.
"I have operated on 1,000 cases of hydrocephalus, but nobody like this baby," Jimenez told ABCNews.com. "The thing that's interesting is that he went so far beyond what we've ever seen before."
Jimenez also doesn't know if there has been any damage to the brain, but so far, he is optimistic.
"The baby moves his arms and legs, starts to smile and cries when people leave the room," he said. "I think he knows who's in the room -- I don't think he's blind and deaf. When his mom had been away for a week or so, the minute she got back, the baby got so excited."
Burdine, who lives in New Braunfels, Texas, knows first-hand the devastation that comes with a hydrocephalus diagnosis. She has had eight surgeries since she was diagnosed at the age of 11.
"The main thing the doctors kept telling [Klaus' family] is that the baby is not in pain," she said. "I know for a fact it hurts -- with the pressure and the fluid surrounding the brain and nerve endings."
As a girl, Burdine began to have migraine-like headaches, visual problems and even the onset of some learning disabilities.
Eventually, she collapsed on the soccer field and was rushed to San Antonio for the first surgery.
"It came on quickly," said the now 44-year-old from Texas. "I was stumbling, falling over myself and couldn't figure out what was wrong."
Doctors discovered she had hydrocephalus. But the diagnosis was nearly missed. Doctors assumed Burdine's symptoms were part of puberty or that she wasn't eating properly.
"My mother was told I would not live to see 18," she said.
The build-up of fluid causes pressure and swelling on the brain and can lead to severe brain damage, vision impairment or death.