PHF In The News: Glen Ridge Woman Spreads Awareness of Pediatric Hydrocephalus

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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PHF Featured Story: Glen Ridge High School Junior Goes to Congress

High School Teenager Collette Umar talks about her experience on Capitol Hill for the Hydrocephalus Awareness Day event

Read the full story: Last Friday, September 23, Glen Ridge High School student Colette Umar delivered a speech in Washington, DC at the first Congressional Adult and Pediatric Hydrocephalus Caucus.

The caucus, was co-chaired by Congressman Leonard Lance and Congressman Tim Walz along with the Pediatric Hydrocephalus Foundation. It was held in the Cannon building and was attended by members of Congress, aides, medical experts, foundation personnel and families affected by hydrocephalus.

  Collette and her father Erich Umar.

US Congressman Leonard Lance Attending the September 13th PHF WALK 2009

MEDIA CONTACT:
Kim Illions
President
Pediatric Hydrocephalus Foundation, Inc.
(732)634-1283
kim@HydrocephalusKids.org

FOR IMMEDIATE RELEASE

*Update: US Congressman Leonard Lance Attending the September 13th PHF WALK 2009

Pediatric Hydrocephalus Foundation Gears up for 2009 Statewide WALK to “Fund a Cure for Hydrocephalus”

Congressman Leonard Lance, (NJ-7th), has confirmed his attendance for this Sunday’s PHF WALK 2009, at Roosevelt Park in Edison, NJ at 11:00am. The Hydrocephalus community owes Congressman Lance a great deal of gratitude for his leadership and commitment to see H. Res. 373 pass in time for this year’s WALK. The Resolution, which designates the month of September as “National Hydrocephalus Awareness Month, passed this past July before Congress adjourned for the summer recess.

Cole Illions is a small boy with a huge smile and two parents, Mike and Kim, who dote on him. He also has a little known incurable brain disease known as Hydrocephalus, an accumulation of fluid in the brain that affects an estimated one million Americans of all ages. One in 500 children born this year will be diagnosed with Hydrocephalus.

This is why Mike and Kim Illions, along with 3 other families, have founded the Pediatric Hydrocephalus Foundation, Inc. They have become tireless advocates for their children and others living with Hydrocephalus. The Pediatric Hydrocephalus Foundation authored H. Res. 373 designating the month of September as “National Hydrocephalus Awareness Month.” This resolution was recently passed unanimously by the US Congress in July 2009. Mike & Kim’s Congressman Leonard Lance was one of the first to Co-Sponsor H. Res. 373 and helped to get it passed in time for this year’s WALK.

On Sunday, September 13th, 2009 at Roosevelt Park in Edison, NJ they will be joined by friends, family, and people living with Hydrocephalus along with well wishers in a 2 mile walk to raise awareness and funds. Registration begins at 10:30am and the walk will start at 11:00am although it is recommended to register ahead of time. This event will be attended by over 300 people.

This year’s WALK has the pleasure of Bill Evans of ABC Channel 7 News as its Honorary Chairperson. There will be live music, entertainment for the kids, free food, soft drinks and a visit from the NJ Devil’s Dancers. The WALK will also have various items up for auction and raffle.

To register for the WALK and/or donate to the PHF, Inc., go to: www.HydrocephalusKids.org and click on “Register” or “Donate”.

All proceeds will benefit the Pediatric Hydrocephalus Foundation, Inc, the nation’s largest organization dealing solely with the support, education, advocacy and funding for research of Pediatric Hydrocephalus.

For more information please contact Kim Illions at kim@Hydrocephaluskids.org or (732) 634-1283.