Two Sisters, Two Brain Disorders, 36 Brain Surgeries

St. Louis family fights for a cure for leading cause of brain surgery in children

Stephanie and her sister Sarah hope the WALK to End Hydrocephalus raises funds for a cure!

Sisters Stephanie (Buffa) Vogt and Sarah Buffa have the same color hair, the same love of math, and the same brain disorder. They both have hydrocephalus, a life-threatening neurological condition that can only be treated with brain surgery. Between the both of them, they have endured 36 brain surgeries to treat their condition.

Hoping to raise money for research for a cure, Stephanie and Sarah will join other families from across Missouri at the Hydrocephalus Association (HA)’s St. Louis WALK to End Hydrocephalus, which is virtual this year due to the coronavirus pandemic. The Virtual WALK will take place online on Saturday, Oct. 17th.

Stephanie was diagnosed with hydrocephalus and had her first brain surgery when she was just 6 weeks old. Now as an adult and mother of three, she feels lucky to have only endured a total of 4 brain surgeries throughout her life to manage her condition. Her sister, Sarah, has had a very different experience. Sarah was diagnosed at 4 years old and has battled brain surgery after brain surgery for 20 years, with 32 in total. During one surgery, there were complications that left her paralyzed on the right side, forcing her to learn how to read, write, eat and walk again.

There are over 1 million Americans 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.

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 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.

“I’ve been very lucky to not have to worry too much about having hydrocephalus, but my sister and so many others have had quite a different journey with this condition. I help organize the St. Louis WALK every year because the walk raises critical funds for research and support programs to help families impacted by hydrocephalus. We need to find a cure for this and I know that by helping HA invest in research we will get there someday…hopefully very soon!” Stephanie said.

The St. Louis event is one of 45 Hydrocephalus Association WALKS held across the country each year to raise funds for the Hydrocephalus Association’s research, support, and education programs. All 45 HA WALKs are 100 percent volunteer-led by dedicated members of the hydrocephalus community. Stephanie has helped organize the St. Louis WALK to End Hydrocephalus since 2008, which has raised over $500,000 to support HA’s mission of finding a cure. The St. Louis WALK to End Hydrocephalus has some exciting activities planned for their virtual event, including a presentation by Dr. Jennifer Strahle, a pediatric neurosurgeon and hydrocephalus researcher, which will be available via Facebook Live, and t-shirt pickup with a DJ playing music in case those picking up their shirts would like to walk around the park.

Local sponsors include Express Scripts, a Cigna company, Children’s Hospital St. Louis, Galanis Cataract and Laser Eye Center, Renewal by Anderson, Law Offices of Stephen G. Bell, Clifton Larson Allen, Boonslick Medical Group, and ARCO. National sponsors for the Hydrocephalus Association WALK program are Medtronic, Aesculap, Codman, an Integra Lifesciences Company, Mid-Atlantic Permanente Medical Group, and CereVasc.

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.