Tampa Family Walks to Find a Cure for Son’s Incurable Brain Disorder

Will join hundreds of families at Elva Rouse Park for the St. Petersburg/Tampa Bay WALK to End Hydrocephalus on Nov. 3

Jetsen Edison Davis is not even two years old but he’s already endured three brain surgeries. Jetsen has hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. His condition has meant multiple hospital stays and some frightening moments for his family. While hydrocephalus affects over 1 million Americans, there is little public knowledge about this brain disorder and not enough research dollars. That’s why the Davis family will join hundreds of local families and businesses at the Hydrocephalus Association (HA) St. Petersburg/Tampa Bay WALK to End Hydrocephalus on Saturday, Nov. 3 at Elva Rouse Park in St. Petersburg.

“The toughest part about Jetsen’s journey with hydrocephalus has been watching him in pain, whether from symptoms, the surgeries, or even the IVs, and not being able to make him feel better. It’s a gut wrenching feeling to have to hold your child down for an IV or a shunt tap and to hear him screaming ‘mommy,’ says Stephanie Davis, Jetsen’s mom.

Hoping to raise money to find a cure for this condition and to raise awareness, Jetsen, Stephanie and her husband, Sean, formed a team, Jetsen & The Shunts, and will participate in the St. Petersburg/Tampa Bay WALK along with Jetsen’s grandma, grandpa, aunt, niece, and supportive friends and co-workers. This is the first time the Davis family will participate in the event, one of 43 Hydrocephalus Association WALKS held across the country to raise critical funds for the Hydrocephalus Association’s education, support, and research efforts. All 43 HA WALKs are 100 percent volunteer-led by dedicated members of the hydrocephalus community.

Now in its 2nd year, the St. Petersburg/Tampa Bay WALK to End Hydrocephalus brings families together from across the St. Pete/Tampa area who are impacted by hydrocephalus. The event, which includes a number of fun activities for kids, offers individuals and families an opportunity to connect with other parents whose children have this condition, which can feel isolating at times, and to help the Hydrocephalus Association get closer to finding a cure.

“For us, the WALK is a way to know that we’re not alone and that other families have shared experiences.  We are all connected through this thing called hydrocephalus and together we can fight for a cure,” Stephanie said.

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. Each surgery brings with it the risk of unknown long-term cognitive and health effects, and hydrocephalus can be fatal.

While helping her son manage his hydrocephalus has been stressful at times, Stephanie says it’s also brought her family together and united them for a cause. “Jetsen’s hydrocephalus diagnosis was life changing on so many levels. I like to say that hydrocephalus is the cause I never knew I’d have. While life changing, it also gave our family a new purpose and that can be fulfilling in so many ways. In our eyes, Jetsen is a very special little boy with a superpower and, like Iron Man has an Arc Reactor, Jetsen has a shunt,” she explained.   

Local sponsors for the 2018 St. Petersburg/Tampa Bay WALK to End Hydrocephalus include Johns Hopkins Medicine, The City of St. Petersburg, 3 Daughters Brewery, Chick-fil-A and Champion Tile & Marble. National sponsors for the Hydrocephalus Association WALK program are Medtronic; Aesculap; Codman, an Integra Lifesciences Company; and Mid-Atlantic Permanente Medical Group.

On-site registration and check-in for the St. Petersburg/Tampa Bay WALK to End Hydrocephalus begins at 8 am on Nov. 3 and the WALK begins at 10 a.m.

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. HA began funding research in 2009 and has since granted over $7 million to research, making it the largest non-profit and non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition.