Baltimore Mom on a Mission to Find a Cure for Son’s Brain Disorder

Jacob Heston was just four weeks old when he was diagnosed with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now at 4 years old, Jacob has endured six brain surgeries to treat his condition. That’s why his mom Jodi hopes to raise much-needed funds for research this Saturday Sept. 12 at the Virtual Baltimore WALK to End Hydrocephalus.

“Hydrocephalus is a tough condition, and I live each day knowing that my son Jake will need brain surgery again, we just don’t know when. I dream of a day that we don’t have to live in such fear, that there will one day be a cure! I am so passionate about raising awareness and funds for hydrocephalus because I want to do my part in working towards this dream, that one day there will be a CURE and we can say NO MORE BRAIN SURGERIES!” said Jodi, who serves as co-chair of the Baltimore WALK, along with Ashley Sebastionelli, David Kellogg, and Sara Curran- Kellogg.

Jacob was born premature at just 26 weeks and developed a brain bleed, which caused him to develop hydrocephalus. As a result, he also developed Cerebral Palsy, Epilepsy, Chronic lung disease, and cortical vision impairment. His conditions have impaired his ability to walk. In fact, recently Jacob achieved a major milestone. He walked without the assistance of a walker or his parents. “When he started taking steps, it was a very emotional moment because we knew he had made the connection that he could move towards something to get it,” Jodi said.

Over 1 million Americans are currently living with hydrocephalus, a complex, 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. Like many hydrocephalus patients, Jacob has a device called a shunt implanted in his brain to drain the excess fluid into 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. Jake’s shunt failed in 2017 requiring three surgeries over a two-week period to fix the malfunction.

The Baltimore WALK to End Hydrocephalus is one of over 40 WALK events hosted by the Hydrocephalus Association each year. This year, due to the COVID-19 pandemic, the Baltimore WALK is virtual. Money raised from the WALK supports the Hydrocephalus Association’s research efforts, as well as its free support and education programs for families around the country. The WALK is especially important this year to help mitigate the impact of the pandemic. People can participate by registering and raising money for their team. They can walk in their backyard, dance, go for a jog – anything they’d like. The idea is to participate virtually doing any fun activity.

“Scientists and doctors are working on amazing research to find better treatment options, options that don’t fail as often or require brain surgery to fix. I’m also hopeful that through this research, they will one day find a cure and I want to do my part to help get us there!” Jodi said.

The Virtual Baltimore WALK to End Hydrocephalus will begin at 9 am on Saturday Sept. 12.


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. Since 2009, HA has invested over $11 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 impacted by the condition.