Local Families Fight for a Cure for Little-Known Brain Disorder

 Will take part in the Orange County WALK to End Hydrocephalus Oct. 12 in Huntington Beach

Adrianna Garibaldo’s son Aiden was just 8 weeks old when he had his first brain surgery to treat his hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Like many families impacted by this condition, Adrianna had no idea what hydrocephalus was or that it could mean multiple brain surgeries over the course of Aiden’s life. Hoping to increase awareness of the condition and to raise money for a cure, Adrianna is joining hundreds of local families at the Orange County WALK to End Hydrocephalus on Oct. 12 in Huntington Beach.

“It was so scary and heartbreaking, I thought I did something wrong to my son and my mind just kept running and running. A few days prior to this appointment I noticed Aiden’s head getting bigger, and kept telling my family something isn’t right. They kept saying, ‘I am sure it is nothing.’ I just felt so helpless as a parent but I knew I had to stay strong so my son could be strong too,” Adrianna explained.

Three-year-old Aiden has already endured 17 brain surgeries to manage his hydrocephalus and one additional surgery to treat related complications. Like so many children living with hydrocephalus, Aiden’s condition has meant multiple hospital stays, physical therapy, occupational therapy, and speech therapy throughout his life.

Aiden with his dad Kenneth McMurray and mom Adrianna.

“One of the biggest challenges our family faces is never knowing when the next surgery will be, never knowing whether a headache is just a headache or the beginning of a shunt malfunction, and never knowing how Aiden will come out of surgery. We try to stay as positive as we can and take full advantage when Aiden is feeling good, but the stress of the unknown never goes away,” said Adrianna, who is one of the volunteer organizers of the WALK.

Heather Kluter, co-chair of the WALK and mom to a 10-year-old daughter with hydrocephalus, said the WALK is a chance to connect with others facing the same challenges and to make a big impact on hydrocephalus.

“Hydrocephalus can feel isolating at times. The WALK gives families an opportunity to make life-long connections that can help them through the tough times. It also helps raise much-needed funds for research so that we can one day have additional ways of treating this condition, and hopefully a cure!” she said.

The Orange County WALK is one of 44 Hydrocephalus Association WALKS held across the country to raise critical funds for the Hydrocephalus Association’s education, support, and research efforts. All 44 HA WALKs are 100 percent volunteer-led by dedicated members of the hydrocephalus community.

One in every 770 babies develops hydrocephalus, a complex, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often, misdiagnosed as Alzheimer’s, dementia or Parkinson’s. The primary treatment for hydrocephalus is the insertion of a device called a shunt – a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries throughout their lifetime, and some individuals will undergo more than 100 surgical procedures.

The Orange County WALK to End Hydrocephalus brings families together from throughout the Orange County area. The event will include remarks by Dr. Michael G. Muhonen, neurosurgeon and the Director of the Neuroscience Institute at Children’s Hospital of Orange County, live music, food, and exciting activities for kids. Local sponsors include CHOC Children’s Neuroscience Institute, Brookfield Residential, DC Dempsey Construction, Sur West Homes, OC Facial Plastic Surgery Ali Sepehr, MD, MVE+ Partners, RXBAR, Pau Maui Vodka, and Blue Buoy Family Swim School. National sponsors for the Hydrocephalus Association WALK program are Medtronic, Aesculap, Codman, an Integra Lifesciences Company, and Mid-Atlantic Permanente Medical Group.

About the Hydrocephalus Association  

Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. Since 2009, HA has invested over $9 million in cutting-edge research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those affected by the condition.