Fords girl chosen as face of hydrocephalus campaign

WOODBRIDGE – Four-year-old Hailie Mussinan was chosen as the face of a national campaign to bring awareness to pediatric Hydrocephalus.

Mussian, a Woodbridge resident, has the incurable and potentially life threatening condition known as Hydrocephalus. The condition is a buildup of fluid inside the skull that leads to brain swelling.

She has had a total of five brain surgeries in 22 days.

Mussian’s face will be featured in a national awareness campaign against the condition, according to the release. Her family will also travel to Washington, D.C. on Aug, 22 for National Hydrocephalus Awareness Day on Capitol Hill.”

Mussian was chosen along with a four-year-old South Carolina boy named Owen Rush.

Source:

The Pediatric Hydrocephalus Foundation has chosen four-year-old Hailie Mussinan of Woodbridge to be the face of its annual “National Face of Hydrocephalus Awareness.”

A little girl from Woodbridge Township has been chosen as the face of a national campaign to fight pediatric Hydrocephalus.

Hailie Mussinan lives with an incurable and potentially life-threatening brain condition called Hydrocephalus, which causes excess fluid to build up in her brain. She is four years old and has already had multiple brain surgeries to install a shunt in her brain, according to a release from the Pediatric Hydrocephalus Foundation.

She has been chosen to serve as a face of the Pediatric Hydrocephalus Foundation’s annual “National Face of Hydrocephalus Awareness.”

Her face will be featured in a national awareness campaign against the condition, and the Mussinan family will travel to Washington, D.C. for “National Hydrocephalus Awareness Day on Capitol Hill” on August 22, according to the release.

September will also be observed as “National Hydrocephalus Awareness Month” for the sixth year, according to the release.

Two children were chosen. Mussinan and Owen Rush, a four-year-old South Carolina boy, according to the release.

“Together as a family we are blessed to have found, and be apart of, the Pediatric Hydrocephalus Foundation and Hailie is honored to represent all the girls with Hydrocephalus in 2014,” said Melody Mussinan, Hailie’s mother.

For information on the Pediatric Hydrocephalus Foundation, visit HydrocephalusKids.org

Source:

4-Year-Old Hailie Mussinan From New Jersey Selected as 2014
National “Face” of Hydrocephalus Awareness for Incurable Brain

Last year our then 3 year old Hailie started having headaches daily sometimes followed by vomiting. We also noticed her balance was off and her eye would slightly turn in at times. We took Hailie to a pediatrician, an eye doctor, and a neurologist who all assured us that it was most likely sinus related. Although her Mother kept insisting something was seriously wrong!

October 2nd of last year Hailie was scheduled for an outpatient MRI. We were quickly admitted shortly after that and she was diagnosed with Hydrocephalus and a cancerous low grade brain tumor; Pilocytic astrocytoma.

Hailie needed an emergency surgery to put in an external drain to relieve the pressure from the Hydrocephalus. Two days following she had a craniotomy and we are blessed to say the tumor was fully resected! Days following the craniotomy a shunt was placed but not for long.The night before we were to get released she had a seizure and a very high fever.

The shunt was removed and another external drain was put in place. Hailie spent the next few days sleeping naked on ice filled cloths to bring the fever down. She was on a very strong antibiotic for 14 days which was hard on her veins during which IV changes were frequent to treat the shunt infection. Finally she was ready for a new shunt and we were able to go home on Halloween.

She had a total of 5 brain surgeries in 22 days! In the summer of 2013, Hailie had another surgery because her shunt incision was not healing correctly. She has also been diagnosed with some eye issues from the Hydrocephalus and tumor. We are in the process of trying correctional therapy.

Today Hailie is a happy 4 year old who loves to dance and is looking forward to starting school next year!

The Pediatric Hydrocephalus Foundation hosts a number of family activities around Woodbridge to raise money and awareness of a pediatric brain condition.

Skyline Mini-Golf had a line full of families on Saturday morning during an event meant to raise awareness of a childhood brain condition.

The Pediatric Hydrocephalus Foundation was founded by Woodbridge residents Michael and Kim Illions in 2009, after their son, Cole, was diagnosed with the brain condition.

The foundation has since grown to include 35 state chapters and one in Africa, according to the Illions.

Proceeds from the event came from 16 hole sponsorships on behalf of Woodbridge businesses and individuals, including Mayor John McCormac and Assemblyman Craig Coughlin, Michael llions said.

The “family fun” event was intended to raise awareness among participants, who were charged the same rate as Skyline Mini-Golf charges at any other time, he said.

The Pediatric Hydrocephalus Foundation’s next event will be a spaghetti dinner from 2-6 p.m. Nov. 3 at the Edison Elks, 375 Old Post Road in Edison. Tickets are $12 for adults and teenagers, $6 for children ages 5-12 and free for children ages 4 and younger. A 50/50 raffle, silent auction and basket raffle will be held.

Visit www.HydrocephalusKids.org for more information.