Glen Ridge resident Colette Umar seems like a typical twenty year old. She hangs out with friends, attends school and even has a plan for after graduation. “I’ve always wanted to work with children and I’ve always liked school. I plan to study early childhood education and then work with little kids.” A stark difference between Colette and most of her peers, though, is that she has undergone fifteen brain surgeries to help control the excess cerebral spinal fluid collecting around her brain. Colette has hydrocephalus.
According to the National Institute of Neurological Disorders and Stroke, it’s estimated that one to two out of every thousand babies is born with hydrocephalus. In infants, this condition can cause symptoms like: an unusually large head, vomiting, irritability and seizures. It’s often congenital, though it can develop at any age for a variety of reasons. The most common causes of hydrocephalus include: spina bifida, a tumor on the spinal cord or brain, certain infections and traumatic brain injuries. It can lead to neurologic issues and even death if not treated.
Many parents learn of their child’s diagnosis while still pregnant or just after birth. Colette’s parents found out that she had hydrocephalus while she was in utero. Her first surgery, when a shunt was inserted into her brain to redirect the excess spinal fluid to a part of her body that could absorb it, took place when she was merely one day old. Her fifteenth surgery was completed when she was in the second grade. “Most of my surgeries were shunt revisions,” she explained, “which is normal for people with this disorder. Shunts aren’t perfect and they don’t last forever.” The Pediatric Hydrocephalus Foundation (PHF) website asserts that an average of 40,000 shunt operations occur each year.
Colette explained that aside from learning delays, hydrocephalus has not interfered with her life too much. Most of her friends know about her condition and are willing to learn more. She also hasn’t had as many surgeries as some others with the condition, so she’s able to see her friends more. She added, “In more severe cases, people don’t always know how to react to the person with hydrocephalus. And if they have many surgeries, they aren’t around to build those friendships. They spend a lot of time in the hospital.”
It’s this lack of understanding that has spurred Colette’s advocacy efforts. While in middle school, she realized that she wanted to learn more about this condition and she wanted others to know about it, too. In high school, she initiated faculty dress down days to spread awareness and then started participating in walks for the PHF. She has also raised money for PHF by making and selling jewelry and decorated flip flops. Twice, she has travelled to Washington DC with PHF to educate members of Congress and to try to secure research funds. During her last trip, she along with other NJ residents, met with staffers from Senator Booker and Senator Menendez’s offices and with a representative of Congressman Payne. Colette added “I hope that all this hard work will result in me seeing a cure for hydrocephalus in my lifetime!”
If you would like to get involved, visit the PHF website to learn more or to donate.
YORKTOWN, N.Y. — The Pediatric Hydrocephalus Foundation and the Town of Yorktown will host the fifth annual New York Pediatric Hydrocephalus Foundation’s walk and family fun day for Hydrocephalus Awareness on on Saturday, Sept. 20, beginning at 11 a.m.
The walk will be held at Jack DeVito Memorial Park at Veterans Road and Commerce Street, Yorktown Heights.
The walk will have music, entertainment, exhibitions, raffles, games, food, face painting, child friendly activities and much more.
Registration is free and donations will be accepted. To register, visit www.active.com/donate/phfwalkny2014.
Durango city councilors were set to approve Tuesday a proclamation drafted by Christina Brown that adds hydrocephalus to the crusades, causes and campaigns for which September is recognized.
Brown, whose son, Jaden, 4, has the condition, gained a similar proclamation last summer from Gov. John Hickenlooper. September was designated National Hydrocephalus Awareness Month by Congress in 2009.
Hydrocephalus, found in about 1 in 500 births, is a swelling of the brain caused by the accumulation of the fluid that surrounds the brain and spinal cord.
Brown, chairwoman of the state chapter of the Pediatric Hydrocephalus Foundation, said Tuesday that a 5-kilometer walk fundraiser for the cause is scheduled Sept. 20 in the Three Springs area.
The 5K walk begins at 10 a.m. at the plaza, 175 Mercado St., near Mercy Regional Medical Center. Walkers can register starting at 9 a.m.
Online registration can be done at http://www.active.com/donate/phfwalkco2014
The mothers of two Macomb children with rare medical disorders have banded together to raise awareness.
On Wednesday, Carol Jackson and Mandi Green, joined Macomb Mayor Mike Inman to declare September as Hydrocephalus and Chiari Malformation Awareness Month.
Jackson’s daughter, Delaney, who will turn 4 in September, has hydrocephalus and Green’s son, Zak, 8, has been diagnosed with chiari malformation.
Hydrocephalus is a life-long condition in which an excess of fluid accumulates in the cavities of the brain.
Delaney, Zak and some of their respective family members joined Inman for the official proclamation.
In an emergency surgery when Delaney was 9 months old, a plastic shunt was implanted in her brain to drain away excess fluid.
Delaney had another surgery in February 2012 to replace the shunt and in October of that same year got an infection from the shunt.
She spent a month at OSF St. Francis Hospital in Peoria while recovering.
Today Delany is doing well, according to Carol.
Green described chiari malformation as, “in simple terms, his skull is too small for his brain.” The condition causes brain tissue to expand into the spinal canal.
Zak had a surgery in July in which some parts of his vertebrae were removed. Chiari malformation, according to Green, causes debilitating headaches and neurological pain.
The Green family will join the Jackson family at the 5K fall fun run/walk for hydrocephalus awareness, set for Sept. 13.
The cost is register is $25 for adults 18 and older and includes a race T-shirt. Children’s registration is $10 and also includes a shirt.
Those who register after Sept. 1 will not be guaranteed a shirt on race day.
Packet pick-up and late registration will be from 4:30 to 6:30 p.m. at Alan Thompson’s State Farm Insurance Office, 623 E. Jackson St.
Same-day registration will be from 7:45 to 8:30 a.m. at the Old Dairy, 201 S. Lafayette St. The event will begin at 9 a.m. Runners, joggers and walkers are encouraged to participate. Strollers are welcome.
Register online for the event at www.active.com/donate/phfrunil2014.
For more information, e-mail Carol Jackson at email@example.com.
Reach Lainie Steelman via email at lsteelman@McDonoughVoice.com, or follow her on Twitter @LainieSteelman.
When you look at 4-year-old Hailie Mussinan, you see an incredibly happy child. She is a perfect example of the pediatric hydroceopalus patients we treat at ANA. In Hallie’s case, a shunt inserted by Dr. Arno Fried lets her live with a potentially life-threatening condition. Shunting, which began in the 1950′s, entails the placement of a tube (the shunt) in one of the brain’s ventricles or into the space of fluid in the spine in order for the spinal fluid to be safely absorbed.
For good reason, Hailie was selected as one of two children to serve as this year’s “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation (PHF) to help raise the level of awareness and education about hydrocephalus in the United States. Hailie, whose family lives in Woodbridge, will represent the girls, while 4-year-old Owen Rush of South Carolina will represent the boys. Hailie will be featured in advertisement campaigns and promotional materials for Hydrocephalus Awareness as we head towards the 6th Annual “National Hydrocephalus Awareness Month” in September. Those passionate about the cause have also created PHF Hydrocephalus Awareness Day on Capitol Hill, which took place in August.
The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about hydrocephalus. PHF, with 34 state chapters, provides support to families, friends and children affected by this incurable brain condition.
PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at State and Federal levels to push for more research and support in the fight against hydrocephalus.
Hydrocephalus is the most common congenital defect of the brain and spine with 1 in 500 infants born with this condition. Although it can occur in adults, hydrocephalus is more common in children, especially infants, and can potentially cause damage to the brain.
YORKTOWN, N.Y. — Despite having an incurable brain condition and enduring more than 60 surgeries, Carli Clement is like any normal 16-year-old in Yorktown.
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 firstname.lastname@example.org.
FAIRFIELD, Conn. – For the past four months, Sally Fulcher of Fairfield has been training to run her first half-marathon this Sunday. But her goal goes beyond tackling the 13.1-mile course: She is seeking to raise awareness for an incurable disease affecting her friend’s young daughter.
For Cindy Shanley, the past year has been filled with doctor’s visits, hospital stays and a constant awareness of the brain disorder hydrocephalus, which afflicts her 20-month-old daughter, Reagan.
The painful condition causes an abnormal amount of spinal fluid to build, widening spaces in the brain. It can cause increased pressure inside the skull and progressive enlargement of the head as well as other problems. It can be fatal.
“There is no cure for this,” Shanley said. The only treatment is surgical, to release the fluid built up in the brain. Even at her young age, Reagan, she said, has already had two surgeries to reduce the amount of fluid in her brain.
Some children are born with hydrocephalus and others develop it. The condition is most common in infants and affects nearly one in every 500 births. Reagan seems to have developed the problem.
“What Sally is doing is to raise awareness.” Shanley said. She and her family are grateful for the time and effort that Fulcher is putting in to help their cause.
Always a runner, Fulcher said she has not done any long-distance runs since having children and has never run far as a half-marathon.
But having the motivation to raise money for awareness and research for her friend’s second child pushed her into running the Stratton Faxon Fairfield Half, which benefits the Pediatric Hydrocephalus Foundation.
“I knew this was a great cause,” Fulcher said. Before Reagan was diagnosed, she said she had no idea that the condition even existed.
“This is the longest I’ve ever run,” Fulcher said. “And it’s a pretty hilly course.”
But she’s hoping the weather will be on her side Sunday and won’t be too hot as she hits the course.
So far, Fulcher’s donation page has raised over $4,800, nearly double her initial goal. Donations can still be made online.