DC Families Unite to Find a Cure for Life-Threatening Brain Disorder

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Will take part in the DC WALK to End Hydrocephalus Sept. 28 at the Lincoln Memorial

What if brain surgery was the only way to stay alive? For children like Khoy Blasi-Diggs, Jr, it is. Khoy has hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Hoping to raise money for a cure, Khoy’s family will join hundreds of other DC area families at the National Capital WALK to End Hydrocephalus Saturday, Sept. 28, at the Lincoln Memorial.

“I had no idea what hydrocephalus was and I felt confused and scared. The most frightening part was when the doctor told us that Khoy would need to have emergency brain surgery to place a shunt and that there were no other options for us to consider,” explained Kari Blasi-Diggs, Khoy’s mom. “He also told us that surgery would not cure him and that he could potentially need additional brain surgeries throughout his lifetime. I just couldn’t understand it all at the time and felt helpless.”

Like so many children living with hydrocephalus, Khoy’s condition has meant hospital stays, occupational therapy, speech therapy and physical therapy over the course of his life. He also has cerebral palsy, which affects nearly 30 percent of children living with hydrocephalus.

Despite his challenges, 8-year-old Khoy is fortunate to have only endured one brain surgery since his diagnosis. Others, like seven-year-old Abagail McCall, have had more brain surgeries than birthdays.

Abagail has undergone 14 brain surgeries in her short life. Her mom, Melissa Kopolow McCall, is one of the volunteer organizers of the National Capital WALK to End Hydrocephalus. Being a part of the WALK is important to Melissa because it gives her family 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.

“I serve as the co-chair of this WALK because I feel that I have to do whatever I can to help my daughter never again face another brain surgery. That means finding a cure, and raising awareness and much-needed funds for research,” Melissa said.

The DC 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.

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 National Capital WALK to End Hydrocephalus brings families together from throughout the DC Metro area. This year’s event will include live music by Unique Dreams Entertainment, food, a sunset dance party on the steps of the Lincoln Memorial and a number of exciting activities for kids.

Local sponsors include Microsoft, Coca-Cola Bottling Co. Consolidated, Sylvan In-Home, Children’s National, TeeKoz Kids Pediatric Occupational Therapy, and Coastal Healthcare Services. 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 National Capital WALK to End Hydrocephalus begins at 4 p.m. on Sept. 28. Register online at: http://www.hydroassoc.org/nationalcapitalwalk.

 

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.

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