Kids with Hydrocephalus set to hit the Chicago streets
BY MATTHEW SCHWERHA For Sun-Times Media
Katie Cook's son, Conor, 3, will be joined by his mother, father, brother and extended family at the Hydrocephalus Association's Chicago Walk on Sept. 15. | Katie Cook
If I told you that a disease was so common that it affected one to two of every 1,000 babies born what would you guess it was? Down Syndrome? Spina Bifida?
No, it's Hydrocephalus. A condition that causes an abnormal accumulation of cerebrospinal fluid within the brain's ventricles that affects a wide range of people including infants, children and adults.
There is no cure for Hydrocephalus, and the treatment, implanting a shunt, is a process that hasn't changed much since its invention in the mid-1950s.
"There is a shunt surgery every fifteen minutes for people with Hydrocephalus in the U.S.," said Karima Roumila, director of support and education for the Hydrocephalus Association. "That's 40,000 surgeries per year. It is the most common reason for brain surgery in children. 50 percent of shunts will fail within the first year of implantation."
For a condition that carries a bill of over $1 billion a year of medical costs in the United States, there is the need for fundraising and advocacy.
That is exactly what the over 30 walks put on around the country by the Hydrocephalus Association provide.
"The walk phenomenon has been big for us," said Paul Gross, chairman of Hydrocephalus Association's Board of Directors. "The walks generate over $1 million in revenue. We have been trying to shift them from a few families getting together to getting corporate sponsors and centralized locations that create awareness."
One such walk will be taking place in Chicago on Sept. 15 starting at Soldier Field and heading south to 31st Street along the lakefront. The move from Arlington Heights, where past Chicago walks have been held, signals the association trying to beef up awareness at the perfect time as September is National Hydrocephalus Month.
"All HA Walks and special events are volunteer initiated and volunteer coordinated," said Randi Corey, national director of special events for the Hydrocephalus Association. "The first HA Walk was held 19 years ago in San Francisco. Last year's Chicago walk had more than 400 participants and raised $32,000."
This year, five volunteers from the Chicago area with children who have Hydrocephalus will lead the efforts.
Joey, 13, from Orland Park
Diagnosed with Hydrocephalus at birth, Joey Harris had his first shunt placed when he was 3 days old.
"At age eight he had a very bad year," said Tim Harris, a HA Chicago walk volunteer and Joey's father. "He spent most of the year at Children's Memorial and had six brain surgeries. Some shunts only lasted hours."
Despite having a shunt failure in Jan. 2012, Joey recovered and went back to school. He attends regular classes and played basketball with his eighth grade team.
Joey, 7, from Arlington Heights
Stacy Buckner's son, Joey, was diagnosed with Hydrocephalus in utero. She leaned on the Hydrocephalus Association for support.
"My first walk was when [Joey] was one in 2005," said Buckner, who too is amongst the volunteers leading the way this year in Chicago. "The first walk there was 30 people. Now we are looking close to three to five hundred."
Team Joey comprises 30 family members and will be out in full force on Sept. 15 for Joey, who despite five Hydrocephalus related surgeries plays baseball and functions normally at school.
Conor, 3, from Crystal Lake
After finding out at her routine, five-month ultrasound that there was a problem with her baby's ventricles, Katie Cook sought a second opinion at Rush [University Medical Center] and was told that Conor had Hydrocephalus. He was shunted at two months.
"He gets home therapy for speech," said Cook, another volunteer who is running the Chicago walk. "He walked late and crawled late. He attends preschool and has been keeping up with his peers."
"We have not had any revisions, so we have been very fortunate with that."
Conor's favorite activities include coloring, painting and swimming.
Jaxson, 1, from Chicago
Jaxson was diagnosed with Hydrocephalus at three months old and had surgery to put a shunt in within a week of his diagnosis.
"He does have some delays and was six weeks early," said Zahadita Kudrna, Jaxson's mother and volunteer for the Chicago walk. "At 11 months he was not crawling. He just mastered the whole sitting up. His head was so heavy when he was younger it was hard for him to lift it up."
Captain Jack is the name of Jaxson's team of supporters who will be present at the walk. He will be sporting a pirate hat.
Preslee, 2, from Lombard
"Preslee was six weeks old when she began to get very fussy and I noticed swelling at the soft spot on her head," said Andrea O'Shea, Preslee's mother and the final volunteer in charge of the Chicago walk. "The next day we handed over our little girl for brain surgery and hoped for the very best. She is now almost three years old and absolutely amazing."
O'Shea points out trying to determine whether a child is having a shunt malfunction or just a regular illness is something that is quite tolling.
Gross said his son William, whose diagnosis of Hydrocephalus led to Gross shutting down his start-up company to join the board of the Hydrocephalus Association and take on a full-time role, remains monitored all the time.
"We are forever vigilant," Gross said. "We have a monitor in his room in case we hear vomiting."
The stories shared by the walk volunteers are far from the worse case scenario that exists for those diagnosed with Hydrocephalus.
"Life is good right now for Joey," Harris said. "We walk for those that we have come to know that have it worse than him."
Follow Matthew Schwerha, who has Hydrocephalus, on Twitter @MatthewSchwerha