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

Will join hundreds of families at Soldier Field for the Chicago WALK to End Hydrocephalus on Aug. 17

When your child lives with a chronic brain condition that has no cure, life can seem daunting at times. Candace Corner and husband Johnny Miller, whose daughter Mari June was diagnosed with hydrocephalus at three weeks old, decided to turn their fear and frustration into action. That’s why on Saturday, Aug. 17, the Corner-Miller family will participate in the Chicago WALK to End Hydrocephalus taking place at Soldier Field. Hydrocephalus is a chronic neurological condition that has no cure and can only be treated with brain surgery.

Like so many children living with hydrocephalus, two-year-old Mari June has endured more brain surgeries than birthdays – having had four brain surgeries to manage her hydrocephalus. Her condition has meant multiple hospital stays and weekly and monthly physical, occupational, speech and developmental therapy sessions.

“Johnny and I have felt so overwhelmed with anger and sadness about Mari June’s situation and the options available to help her. We want to channel all of that darkness into the light and the Chicago Hydrocephalus Association WALK is an opportunity to take those literal steps towards realizing a better future for Mari and for other families and individuals battling hydrocephalus – a future without shunts, revisions, endless radiation, treatments and invasive surgeries,” Corner explained.

This is the first time Candace and her family will participate in the event, 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 Candace and her husband because it gives them a chance to take an active role in finding a cure for Mari June and the other 1 million people living with hydrocephalus in the U.S.

“As Mari’s parents, we see our most important purpose in life to help her live every day of hers to the fullest, and that means exploring every way in which we can find a cure and expand her options for the future,” explained Candace. “It’s also extremely depressing and challenging to live with a condition with so little control or options so our hope is that following this inaugural year as Team Mari June, we can plan to add an after-party to the walk next year to celebrate everyone who has shown their love and support by donating to this important cause.”

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 Chicago WALK to End Hydrocephalus brings families together from Chicago and its surrounding suburbs. This year’s event will include live music, food, and a number of exciting activities for kids, including fun experiments conducted by the SciTech Museum. Local sponsors for the 2019 Chicago WALK to End Hydrocephalus include M&R Label, Companion Animal Hospital, Sweet Bakes Chicago, Original Bagel & Bialy, Jennifer Littner Photography, GoGo Squeez, Eric Reischl Photography, SciTech Hands on Museum, Fresh Thyme Farmers Market and the Husky Love Band. National sponsors for the Hydrocephalus Association WALK program are Medtronic, Aesculap, and Codman, an Integra Lifesciences Company.

On-site registration and check-in for the Chicago WALK to End Hydrocephalus begins at 9 am on Aug. 17th and the WALK begins at 10:30 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. Since 2009, HA has invested over $12 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.