For many with hydrocephalus, it’s not unusual to go much of their lives without knowing
another person who undergoes the same struggles they do. For that reason, and many more, events like the Philadelphia WALK to End Hydrocephalus on Saturday, Sept. 21 serve an instrumental role across the region.
Julie Shannon, an Eastern Regional High School alumnus, serves as the co-chair for the
Philadelphia WALK to End Hydrocephalus, one of nearly 50 fundraiser walks that take place across the United States each year to raise money to research the condition.
Hydrocephalus is a medical condition where fluid builds up within ventricles of the brain,
creating immense pressure, causing severe headaches with the ability to cause brain damage as well. Brain surgeries are not a question of “if” but “when,” with it not being uncommon for an older hydrocephalus patient having had more than 100 brain surgeries during their lifetime.
For those with the condition, a shunt is typically implanted in the brain that can redirect the fluid buildup to other parts of the body to allow for a normal lifestyle.
Shannon got involved with the organization due to her mother suffering from hydrocephalus, having been diagnosed approximately 25 years ago.
“Over a million Americans have it, which is a lot of people, but surprisingly it still feels like no one knows about it or talks about it,” said Shannon. “My mom had never met another person that had hydrocephalus until the first [Philadelphia WALK to End Hydrocephalus] two years ago, and she had had it for over 20 years at that point.”
With September being Hydrocephalus Awareness Month and the walk entering its third year, Shannon is hoping to continue to spread the word about the condition across the East Coast, for the benefit of both those who might be diagnosed with it in the future and those who currently have it and are hoping for fundraising that can bring help.
“Our goal is to make hydrocephalus a household name, and that will take time,” said
Shannon. “We have participants that come to the walk every year that say it’s the first time they’re meeting another person with hydrocephalus, and with new walks being added every year, the community is growing.”
According to Shannon, the walk fundraised approximately $37,000 in its inaugural year in 2017, smashing the Hydrocephalus Association’s estimate of $16,000. Last year, the walk raised $41,000, leading Shannon and others to aim for at least $42,000 this year. In its first two years, more than 300 people have participated in the walk at the Philadelphia Zoo.
Krissy McDowell from Blackwood in Gloucester Township has participated in the walk since its inception and is looking forward to once again attending this year on Saturday, Sept. 21. After being diagnosed at the age of 6, McDowell had a shunt inserted.
“It really affects my life just when surgeries have to happen, although I do have chronic
headaches,” said McDowell, now 29 years old. “I’ve had 13 brain surgeries during my life, which is actually on the lower side compared to how many others have had.”
Thanks to events like the upcoming walk in Philadelphia later this month, McDowell says she enjoys being able to raise money for the association and help in pushing for further research. There is currently no cure and no known cause for the condition.
“The more funds we raise, the better chances we have at stronger research and better
treatments for it,” said McDowell. “We need better treatments for more durable shunts, and other things like that moving forward.”
Fellow Camden County resident Frankie Bilbao, who is 2 years old, was born with
hydrocephalus. His parents, Michelle and Frank, were made aware 22 weeks into the
pregnancy that he would have hydrocephalus.
Born early at 37 weeks, Frankie’s head was 55 centimeters in circumference and had a shunt placed during brain surgery just one day after being born. During his short life, he’s faced numerous seizures, multiple hospitalizations, a feeding tube and more.
Regardless, his parents say he continues to stay strong and live his live, largely in part due to support from the Hydrocephalus Association.
“We are grateful to his therapists as well as doctors and nurses who have brought him to where he is,” said Michelle Bilbao.
Through the association, the family says they have been able to improve Frankie’s quality of life in countless ways than they could have imagined are needed compared to a traditional birth and child.
“Connecting with other moms and reading the feature stories helped me understand about
certain pillows and support structures and even a car bed,” said Michelle. “There’s a
community that has done this before and it gave me not only the resources, but also the
confidence to move forward.”
While some may be afraid of caring for a child with the disease, father Frank says the family has no regrets on caring for Frankie every day.
“We knew how disabled he could be and we chose to bring him into this world and he has been nothing but a blessing,” said Frank. “We are grateful to the Hydrocephalus Association for providing the resources we needed to understand what it would be like to bring him home.”
The Philadelphia WALK to End Hydrocephalus is on Saturday, Sept. 21 at the Philadelphia Zoo. Donate and learn more by visiting www.hydroassoc.org.