Houston family hopes to raise money for a cure at the WALK to End Hydrocephalus on Sept. 21 at Buffalo Bayou Park
Brothers Ryder and Kai Bruen not only share the same birthday, they also share the same brain disorder. The 13-year-old twins have hydrocephalus, a life-threatening neurological condition that can only be treated with brain surgery. Between the both of them, they have endured 18 brain surgeries to treat their condition. Hoping to raise money for research for a cure, Ryder, Kai, and their parents, Heather and Jason Bruen, will take part in the Houston WALK to End Hydrocephalus on Saturday, Sept. 21 at Buffalo Bayou Park.
Like so many children living with hydrocephalus, Ryder and Kai’s condition has meant multiple hospital stays and weekly and monthly occupational therapy, speech therapy and physical therapy over the course of their lives, although lately they’ve been able to scale it back to just physical therapy. They also both have cerebral palsy, which affects nearly 30 percent of children living with hydrocephalus.
“We’ve lost count of the ER visits, the hospital stays, CT scans, MRIs, x-rays, and the headaches and vomiting that come with having hydrocephalus. Even now with him being ‘good’ the fear, anxiety, and worry that takes over when they get a headache and get sick is heartbreaking. We cannot tell them they will never have surgery again. Chances are, one or both of them will,” Heather said.
The Bruens formed a team, Team Bruen, and will participate in the Houston WALK for the fourth time. The Houston event 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.
Being a part of the WALK is important to Heather and Jason because it gives them a chance to take an active role in finding a cure for their sons and the other 1 million people living with hydrocephalus in the U.S.
“It would be amazing for a cure to be found or even less invasive ways to treat hydrocephalus. That’s why we participate in the WALK,” Heather said. “We also love meeting other families who understand what our life may look like on the not-so-good days.”
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 Houston WALK to End Hydrocephalus brings families together from Houston and its surrounding suburbs. This year’s event will include live music by DJ Bhavin, food, and a number of exciting activities for kids, such as face painting, a photo booth and apperances by super heroes and Topper, the Children’s Memorial Hermann Hospital mascot.
Local sponsors include Big Power Yoga, Kraitman Photography, Children’s Memorial Hermann Hospital, Mischer Neuroscience Institute, Texas Children’s Hospital, Allegiance Bank and SB Accounting and Business Services, LLC. 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 Houston WALK to End Hydrocephalus begins at 1 p.m. on Sept. 21st. To register online, visit: http://www.hydroassoc.org/houstonwalk.
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.