About PHF

Mailing Address:

Pediatric Hydrocephalus Foundation, Inc.
2004 Green Hollow Drive
Iselin, New Jersey 08830

Phone Number: (732) 634-1283
Fax Number: (847) 589-1250

Kim Illions
President
(973) 476-5122
kim@hydrocephaluskids.org

Michael Illions
National Director of Advocacy
(973) 997-6288
mike@hydrocephaluskids.org

To make a tax-deductible donation to the PHF, Inc., please visit our donation website.

MEMBERS

President- Kim Illions
Vice President- Michael Illions

On July 25th, 2005 at 8:11am our little miracle baby boy Cole, came into the world. Weighing just 7lbs, 4 oz, the baby that we were told wouldn’t survive, went immediately to the “well” nursery. Yes, he was born with Hydrocephalus, but to us and everyone who would come to know him, he was perfect in every way.

On the second day of his life, Cole had his first shunt placed. He came through surgery with flying colors. That turned out to be the first of several surgeries to combat problems due to Hydrocephalus. From even before Cole was born we were searching for answers and a support system on this condition called Hydrocephalus.

With the assistance of Cole’s Doctor and Nurses at his hospital, we were asked to be the parent liasons to a new first of its kind in New Jersey Hydrocephalus support group serving the Tri-state area.

Working with other families, we are committed to funding a cure for Hydrocephalus and have started the Pediatric Hydrocephalus Foundation with that goal in mind. Our mission is to offer support and strength to other families dealing with Hydrocephlus, and with your help we will be successful.

Jennifer Westdyke- Secretary
Jeff Westdyke- Board of Directors

My name is Jennifer Westdyke and my son Jeffrey has Hydrocephalus.  When I was 5 months pregnant, they diagnosed Jeffrey with the disorder, they told me my son would never live a normal life and that I should consider terminating the pregnancy.

At the time, I felt very alone and very scared.  He was born 6 weeks early and his shunt was placed when he was 3 days old.  Since then, he’s lived a fairly normal life.  My main reason for being an active member with the Pediatric Hydrocephalus Foundation is to help and talk to people who find themselves in a situation like my own.

I want new parents, expecting parents, parents with older children who acquire the disorder to know, they are not alone!  It wasn’t until after Jeffrey was about a year old that I found out about a very special group of people who had put together a support group @ the Neuroscience Institute at JFK Hospital in Edison.  I was so happy to find them and I’m so happy to be a part of this very special foundation.

My time and energy is focused on helping to raise money and awareness and hopefully one day a cure for Hydrocephalus.

John & Mary Ann D’Oria - Board of Directors

Our daughter, Adrienne, was born in 1993. There was no “Google” and no “internet”, so when we were told that she had developed hydrocephalus at the age of 10 months, we were shocked. We had nowhere to do research and we had never known anyone with this condition.

When we signed for the VP shunt, our surgeon told us that this was a lifelong decision. Once shunted, you cannot go back. We knew that day that those words would stay with us forever.

Adrienne has since had more than 30 brain surgeries. We have seen her head cut over and over again. As she has grown into a teenager, we have seen how this affected her emotionally and physically.

When we met the members of the Pediatric Hydrocephalus Foundation, we knew that their mission was our mission. We want to help raise awareness, so children no longer have to endure these many surgeries and hospitalizations. It is time that these children had a voice.

There needs to be more research dollars available to find a cure for this horrible condition.

In 1993, there was no internet and no support groups. That has thankfully changed. Hopefully through PHF, we can reach more families and provide the support that they need for their children with hydrocephalus.

Mark & Michelle Janson - Board of Directors

On June 8th 2000, we were blessed with a beautiful baby girl, Allison. Unaware at the time, Ally had differences that would change our lives forever. Just shy of her first birthday, during an eye exam, Ally’s ophthalmologist noted she had swollen optic nerves.

Although asymptomatic, she was immediately sent by her neurologist for an MRI which confirmed she had hydrocephalus related to aquaductal stenosis. We interviewed several neurosurgeons, researched our options, and on July 9th, Ally underwent a Third Ventriculostomy. To this day, Ally has been shunt free, and despite other rare medical conditions, leads a fairly normal life.

We have become active with PHF, not only to meet families like us, but to provide opportunities for others. By providing support to new families and education to the local community, we hope to make more people aware of this life long condition. Also by helping to raise money, we hope to aid our local medical community in research and provide financial support to local families in need.

Our dream is to pay it forward to others, and that one day we can hold our heads up high and find a cure for hydrocephalus!

Rick & Ashley Mantheiy - Pennsylvania State Directors

We are originally from from York, PA. We recently relocated to Hummelstown, PA to be closer to our son’s hospital. The word Hydrocephalus shell shocked our family three and a half years ago. My eldest son Drake was born prematurely at 35 weeks but everything seemed like he was quote “Healthy”. At his one week check-up they noticed that his head was rather large compared to other kids. We were sent to get an ultrasound of his head at our local hospital. It showed nothing. Four more months went and his head was even bigger and he was very sick. I decided to change his PCP and we were sent back over to the hospital for a ultrasound of his brain. It showed that Drake had moderate communicating Hydrocephalus. He also suffers from Arnold Chiari Malformation. He has endured 5 brain surgeries and three kidney surgeries for renal failure.

In April 2008 came another surprise our new baby boy Ben was born. I knew everything that I endured with Drake, I wanted to make sure I was one step ahead to ensure that Ben gets the best medical care in the event he has Hydrocephalus as well. At his two month check up we were sent to the hospital to get a ultrasound of his brain. It seemed so surreal that this might happen again. It showed nothing. Nine and a half months had past, we were sent to see Dr. Mark Iantusca, a Pediatric Neurosurgeon at Penn State Milton S. Hershey Medical Center. He sent us for a CAT Scan which showed Ben suffered from Aqueductal Stenosis which is a blockage in his brain which gave him Hydrocephalus. Ben had a shunt placed May 2009 and had his first revision Feburary 2010.

Working with the PHF has been a pleasure because they have the same goals as we do “Funding a Cure for Hydrocephalus” I never thought both of my boys would have Hydrocepahalus. It has definately tested our strenght in our family. I alway tell them that we have “Mountains to climb, but we will always do it as a family”

Rebecca Minasian - Rhode Island State Director

On June 13, 2005 our beautiful Caitlin entered this world 12 weeks early along with her twin brother Ryan. She was beautiful and at only 2lbs 15oz not very strong.

At 2 weeks old she developed E coli meningitis and within a few weeks developed Hydrocephalus as a result. Her first shunt was placed when she was only 8 weeks old. In the year that followed she had 8 surgeries to insert and remove shunts in different locations of her brain due to large amounts of scar tissue. We were blessed to then go 3 years without another surgery until September 2009 when she underwent her 9th shunt surgery.

My reason for getting involved with PHF is to make people more aware of Hydrocephalus and everything it means to a child living with the condition. My daughter looks like a typical child with the exception of not walking but unless you know her, you would never know the amount she’s had to endure.

I would like to help fund research and help other families dealing with this complex condition.