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.

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One of the many ways PHF raised awareness about Hydrocephalus in 2012 was through outreach. Speaking to people whenever the opportunity presented itself, whether informally or formally, helps the cause.

Last year, the PHF was able to reach out to a whole new community in New Jersey by speaking to numerous Freemason organizations across the State of New Jersey.

One of the members of the Freemason Society happens to be a Dad to a teenager with Hydrocephalus. Freddy Stein also serves as the Event Coordinator for the PHF in New Jersey.

Thanks to that connection, we were able to educate hundreds of people about Hydrocephalus and we were fortunate enough to be the recipient of many generous donations.

As we celebrate the beginning of a New Year, we also celebrate the Birthday of the Pediatric Hydrocephalus Foundation.

Four years ago on January 9th, our dream became a reality. The Pediatric Hydrocephalus Foundation, Inc. was officially “open for business.”

Thanks to your generous and continued support the PHF celebrated many successes and accomplishments in the year 2012.

We started off 2012 by launching a new initiative called PHF “Families First for Hydrocephalus.” This program introduced the PHF into hospitals around the Country and to families dealing with Hydrocephalus.

The PHF returned to Our Nation’s Capital in August for the 2nd Annual PHF Hydrocephalus Awareness Day on Capitol Hill. With over 70 attendees, representing 25 families and 14 States, the PHF met with the offices of over 40 Members of Congress to advocate, educate & raise awareness.

By the end of the day, it looked like everyone on Capitol Hill was wearing the PHF’s signature Hydrocephalus Awareness solid Light Blue bracelet or lapel pin!!

For September’s National Hydrocephalus Awareness Month, the PHF introduced “Hydrocephalus Sibling Appreciation Day”, Siblings from 10 families were randomly chosen and were awarded a Family Night at the Movies, courtesy of the PHF, Inc.

In 2012, the PHF has awarded over $110,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus Research & Education:

CHOC Foundation
Goodman Campbell Brain & Spine Foundation
Cameron Can Foundation
St. Cloud Hospital
Boston Children’s Hospital
Children’s Hospital Colorado
Yale-New Haven Children’s Hospital
Akron Children’s Hospital
Duke University Medical Center
Kapi’olani Medical Center for Women and Children
Kona Community Hospital
Nationwide Children’s Hospital
Albert Einstein College of Medicine
University of Utah
University of Illinois at Chicago

The PHF, an all-volunteer 501 (c) (3) dues free non-profit charitable organization, now boasts thousands of members across the Country, with over 30 State Chapters, and more to come!

Aila Elmore, 5 months old of Indiana, and Matthew Elicea, 9 years old of California, will serve as the PHF’s 2013 Ambassadors for our “National Face of Hydrocephalus Awareness” Campaign, as we head towards the 5th Anniversary of Hydrocephalus Awareness Month in September.