NYC Grandmother Fights for a Cure for Leading Cause of Brain Surgery in Children

Will take part in the NYC WALK to End Hydrocephalus on Nov. 9

Dreame Saliyah Monplaisir was just 3 months old when she had her first brain surgery to treat her hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. As is often the case, Dreame’s family had no idea what hydrocephalus was or that it could mean multiple brain surgeries over the course of her life. Now, her grandmother Tammara Tillman is on a mission to increase awareness of the condition and raise money for a cure by taking part in the New York City WALK to End Hydrocephalus Saturday, Nov. 9 at Hudson River Park Pier 63.

Nine-year-old Dreame has endured three brain surgeries in her short life and after her latest checkup with her neurosurgeon, it was discovered that Dreame will need yet another brain surgery. Her condition has meant multiple hospital stays and weekly and monthly physical, occupational, and aqua therapy sessions, and developmental delays. She also has cerebral palsy and wears a brace on each leg to help her walk.

“I think it’s mind boggling that this is a chronic condition that affects over a million people, and the only treatment is brain surgery!” Tammara explained. “When you’re caring for someone with hydrocephalus, you walk on pins and needles because you don’t know from day to day when you’re loved one is going to have a shunt malfunction or how the shunt is impacting the brain. As Dreame continues to grow, we don’t know what’s going to happen or what other side effects she will have.”

Dreame and her family at a previous NYC WALK to End Hydrocephalus.

Dreame and her family have been participating in the NYC WALK since its inception. The WALK 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 Tammara because it gives her a chance to take an active role in finding a cure for Dreame and the over 1 million Americans living with hydrocephalus.

“For me, this issue is bigger than just my granddaughter. Hydrocephalus affects a lot of people but people just don’t know about it. That’s why participating and getting involved in the hydrocephalus walk is important. We need to educate people, we need a cure and we need more treatment options!” she 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 will undergo more than 100 surgical procedures.

The NYC WALK to End Hydrocephalus will bring families together from across the city and its surrounding suburbs. This year’s event will include music, food, face painting and other exciting activities for kids.

Local sponsors for the 2019 NYC WALK to End Hydrocephalus include Budget Truck Rental, Cheer New York, Clowns.com, Goldman Family, 525 W. 26th St. Starbucks, Photography by Gendery @im.artixx. National sponsors for the Hydrocephalus Association WALK program include Medtronic, Aesculap, Codman, an Integra Lifesciences Company, and Mid-Atlantic Permanente Medical Group.

On-site registration and check-in for the NYC WALK to End Hydrocephalus begins at 11:30 am on Nov. 9th. To register online, visit: www.hydroassoc.org/nycwalk.

 

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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