DC Family Walks to Find a Cure for Daughter’s Incurable Brain Disorder

Will join hundreds of families at the Lincoln Memorial for the National Capital WALK to End Hydrocephalus on Sept. 15

Melissa Kopolow McCall and Matt McCall never knew the meaning of courage until their daughter Abagail was born. Despite having had 12 brain surgeries before turning five, Abagail brings joy to everyone she meets. Abagail has hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. Her condition has meant multiple hospital stays and a host of other health issues. 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 McCall’s will join hundreds of local families and businesses at the Hydrocephalus Association (HA) National Capital WALK to End Hydrocephalus on Saturday, Sept. 15 at the Lincoln Memorial.

“Abagail has literally never met someone she did not make smile. She laughs in her sleep and dances at every opportunity.  She is the embodiment of strength and perseverance. She is my hero and I feel honored to even know her,” says Melissa, who volunteers her time to help organize the National Capital WALK to End Hydrocephalus.

This is the sixth time Melissa, Matt, Abagail, and her twin brother Asher 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.

The McCalls will walk representing Team Abagail: Though She Be But Little She is Fierce.

Now in its 8th year, the National Capital WALK to End Hydrocephalus brings families together from across the DMV. This year’s event will include a twilight walk to raise awareness, a sunset dance party on the steps of the Lincoln Memorial, and a number of fun activities for kids, including games and a scavenger hunt organized by MOCO Movement Center of Rockville.

Being a part of the WALK is important to Melissa and Matt because it gives them 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.

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.

Local sponsors for the 2018 National Capital WALK to End Hydrocephalus include Children’s National Health System, MOCO Movement Center, Playwell, Yoga Heights, Coca-Cola Bottling Co. Consolidated, Microsoft, Dominoes Pizza, and Just for Me OT. 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 pm on Sept. 15 and the WALK begins at 6 pm. To register online, visit: https://support.hydroassoc.org/2018Nationalcapitalwalk.

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.