Teen turns struggles into charityRay Vanco's battle with idiopathic intracranial hypertension inspired him to collect toys for children stuck in hospitals during holidays
Ray Vanco is honored as the Blackhawks Youth Hockey Player of the Month for April in a pregame ceremony last month. Vanco, who has idiopathic intracranial hypertension, a neurological condition, started a charity for children when he was 8. (Scott Strazzante, Chicago Tribune / May 4, 2011)
  • By Paul LaTour, Special to the Tribune May 4, 2011ct-x-s-health-intercranial-hypertensi20110504
  •  Ray Vanco is a shy, unassuming teenager from Orland Park who would be quite content if strangers never knew his name or face.He preferred to roam the United Center halls with his best friend than sit in his seat between periods of a recent Blackhawks game while 20,000-plus fans learned about his battle with idiopathic intracranial hypertension and the charitable organization Vanco founded when he was 8."I just felt like getting up," Vanco said well after a video was shown of him being honored as the Blackhawks Youth Hockey Player of the Month for April in a pregame ceremony.

  • Vanco, 15, was being recognized for creating the Ray Vanco Children's Foundation. Each year, he collects thousands of toys and distributes them to patients who must spend Christmastime at various Chicago children's hospitals.The idea grew out of his own struggles with idiopathic intracranial hypertension, a neurological condition that affects about 1 in 100,000 people in which cerebrospinal fluid does not drain properly and causes a buildup of pressure in the skull. The condition gives Vanco tremendous headaches and led to his having two shunts implanted, one in his neck and another in his spine. It also forced him to quit playing hockey, a sport he has loved all his life.The foundation began in 2004 after he needed surgery for ruptured eardrums caused by pressure in his skull. Vanco said he wanted to do something to help other children struggling with illness.He's had 26 surgeries since then, including 17 in 2008 when an abdominal infection related to a shunt caused life-threatening damage."We almost lost him that year," said Kris Vanco, Ray's mother. "It's been a challenge, but he's fighting through it.

  • "Idiopathic intracranial hypertension isn't as common in children as it is in adults. About 80 percent of adults with it are women, though the gender split in children is 50-50, said Thomas Mizen, a neuro-ophthalmologist at Rush University Medical Center and an expert on intracranial hypertension.Vanco wasn't diagnosed with the condition until December 2006, roughly five years after he started seeing a neurologist. His first symptoms were facial tics and memory lapses.Once when Ray was waking up from a nap before a band recital in fourth grade, his mother told him to get dressed. But when she returned to his room a short time later, he was still holding his shoes. He didn't know how to put them on."Memory loss is not usually a common diagnostic tool for intracranial hypertension," Mizen said. "But in chronic cases, a lot of things happen over time that can start affecting a patient neurologically."Further complicating a proper diagnosis was a peculiarity in his optic nerve where it enters the back of the eye. Swelling of that nerve often indicates to physicians that there is pressure building up in the head.But Vanco's optic nerve doesn't respond to pressure and looks odd even when pressure isn't high, said David Ritacco, a child neurologist at Children's Memorial Hospital who treats Vanco.Even when the correct diagnosis was made, Vanco wasn't in the clear. Idiopathic intracranial hypertension often can be cured with a single spinal tap, or through a medication called Diamox or its generic counterpart, acetazolamide. But Vanco is allergic to the medication and the spinal tap wasn't enough. That's when he had the shunts put in.

  • Vanco appeared to turn a corner last fall. He was cleared to return to hockey, but only if he played goalie so he wouldn't face contact. He joined the Brother Rice High School varsity team.In October, the Chicago Wolves brought him in for a mini-clinic with goalies Drew MacIntyre and Edward Pasquale as part of their Wolves Wish program. In his first game after receiving tips from the pros, Vanco posted a shutout.But a few days later the family was involved in a minor car accident on the way to a Wolves game. Ray suffered whiplash, and the neck pain has yet to subside. His doctors don't know for sure if the pain is related to his condition or not.All anybody knows for sure is that he was dealt a difficult setback."I've been a little worried about him because after you get a taste of life being normal again, (a setback) hits you harder," Ritacco said.Because of the almost constant pain he has been in, Vanco hasn't attended school on a regular basis since fifth grade. He left Brother Rice in Chicago this year to attend Carl Sandburg High School in Orland Park, but has only been to classes a handful of weeks."I started to go back to school, but decided not to again," said Vanco, who gets tutored at home. "My neck is bothering me a lot. I might hold off and try getting healthier rather than having to stop going every time I'm in too much pain."Through it all, Vanco remains positive. His foundation focuses his energies while continuing to bring him a modicum of unwanted attention, like that night at the United Center."I've asked him, if he doesn't want attention then why did he start a foundation?" Kris Vanco said with a smile.It's simple. Ray Vanco does want attention — just not for himself.    Copyright © 2011, Chicago Tribune
St. Michael student making a difference for children
Ray Vanco of Orland Park hosts annual drive
December 04, 2007
Ray Vanco, a sixth grader at St. Michael School in Orland Park, is making a difference for sick children throughout the Chicagoland area. The Ray Vanco Childrens Foundation is hosting its third annual toy drive.
New and unwrapped toys for newborns to 18 years old can be dropped off at several Orland Park locations, including St. Michael School, 143rd and West Avenue; the Vanco home, 13642 Birchbark Court and the Ryan home, 11801 Shade Cove Court. Other locations include Studio 42 Photography, 19056 S. Henry, Mokena; All Aboard Diner, 1510B E. 75th St., Downers Grove and Barraco’s Pizza, 13443 S. Cicero, Crestwood. Donations will be collected until Dec. 10.
Last year, Ray collected more than 1,800 toys. This year he is hoping to collect even more. He is also hoping to purchase about 40 CD players for patient and procedure rooms. Monetary donations are also being accepted. Checks should be made payable to the Ray Vanco Childrens Foundation and mailed to the Vanco residence at 13642 Birchbark Court, Orland Park, IL, 60462.
Ray and his mother, Kris, will deliver toys to the University of Chicago Comer Children’s Hospital and to the Children’s Memorial Outpatient Center in Tinley Park. If enough toys are collected, Ray is hoping to be able to deliver toys to La Rabida Children’s Hospital in Chicago, as well.
Ray is a patient at both Comer Children’s Hospital and Children’s Memorial.
He has been diagnosed with Pseudotumor Cerebri, a disease where the brain actually thinks he has a tumor, preventing fluids from flowing properly. Ray had a shunt placed in his back to allow the fluids to flow. Ray’s condition requires him to continue to visit the hospitals regularly.
Ray can no longer play contact sports, requiring him to give up his beloved hockey. He now fills his time by teaching skating skills and the basics of hockey to young skaters. Last year Ray was honored at a Blackhawks game, on the ice, for his toy drive efforts.
Ray has been recognized by several organizations for his work. He won at the store and regional levels for the Kohl’s Kids Who Care 2007 contest. He was just selected as the youngest recipient to receive the Humanity to Mankind Award from Sertoma. Ray has also been asked to be a member of the Comer Children’s Hospital teen advisory board, where he is helping to facilitate what children want by working with architects for an addition to the children’s wing of the hospital. Ray will use any monetary awards to fund his foundation.
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