26°
Carli suffers from hydrocephalus, a condition in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in more than one million Americans. Untreated, hydrocephalus could be fatal.
Carli was diagnosed with the disease at four months old when her head began to swell. Since her diagnosis, her father, Kevin Clement, has become heavily involved in raising awareness and funds to fight hydrocephalus.
"The condition is permanent," Clement said. "We're one of the fortunate ones. She's a fairly normal girl. She misses school sometimes, but she lives a normal life with a few restrictions."
Many people with hydrocephalus have developmental, physical or mental delays.
Last year, Carli started a group called Carli's Angels and raised more than $5,000 for an annual walk in New York. Kevin Clement recently joined the New York chapter of the Pediatric Hydrocephalus Foundation.
"The disease affects a lot of people, but it isn't widely known," he said. "We get limited funding. All funds raised go exclusively to patients and their family. No one at the foundation takes a salary. We all work as volunteers driven by passion."
On Sept. 20, the Clements will be hosting a walk for hydrocephalus at Jack DeVito Memorial Park. Vendors and exhibitors will be on hand along with dancing, a disc jockety and a bounce house. The Clements are still looking for sponsors.
"We're looking to make it a great time and a great event for everybody," Clement said. "This is very much a grassroots effort."
Next month, the Clements will be in Washington, D.C., meeting with staff members and congressman on Capital Hill to continue to raise awareness.
Despite her condition, Carli plays sports and recently went to Paris and Rome for her 16th birthday.
"She had a wonderful time," her father said. "She saw as many sites as she could. She doesn't allow much to keep her down."
For more information, visit www.carlisangels.org or e-mail Kevin Clement at kclement@hydrocephaluskids.org.
Click here to follow Daily Voice Yorktown and receive free news updates.
