Hailie Mussinan, of Woodbridge, is just 5, and she already has had a staggering seven surgeries.

An MRI on Oct. 2, 2012, revealed Hailie had a brain tumor that required immediate surgery. At St. Peter’s University Hospital, Hailie’s parents met with Dr. Arno Fried of Advanced Neurosurgery Associates (ANA).

“(Dr. Fried and his team’s) demeanor and knowledge were extraordinary. Immediately it was like a weight lifting off of us,” said Melody Mussinan, Hailie’s mother. “They couldn’t initially tell us anything — what kind of tumor, whether she was going to live. As parents, we were petrified waiting to find out what was happening to our child.”

Hailie was diagnosed with a juvenile pilocytic astrocytoma (JPA), a rare childhood brain tumor, the accumulation of cerebrospinal fluid (CSF) in the brain that can cause enlargement of the head and, in some instances, brain damage.

“When Dr. Fried did the craniotomy, he told me that the skin of her skull was so thin from the pressure of such a large tumor that he actually started seeing the tumor before he cut into it,” Melody Mussinan said, adding that the tumor was described as the size of a golf ball, surrounded by a softball-sized cyst.

“You can imagine that the pain inside her head. Hailie was always the quiet kid who sat on the steps with Mom and Dad and watched her sisters play in the yard. We always just thought that was her personality.”

Before her initial MRI, Hailie was said to be frequently vomiting and coming down with headaches.

“I never left Hailie’s side,” her mother said. “I never stepped foot out of her hospital room. My family and friends were helping around the clock to care for Hailie’s three sisters so that my husband could work our small family business and come to the hospital. The doctors at ANA and nurses in the pediatric ICU literally become my family. They were who I cried to.”

Hailie needed an external draining device (EDD) and a craniotomy, followed by a shunt, which 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.” Just days before being discharged, Hailie went into a seizure simultaneously as her shunt failed. Hailie was given a high dose of antibiotics as well as EDD and shunt replacements.

Hailie was discharged on Oct. 31, 2012. In 22 days, she had accumulated five surgeries.

“For such a little girl, my husband and I are enamored by her strength,” her mother said.

In the summer of 2013, Hailie underwent a shunt incision revision under pediatric plastic surgeon Dr. Frank Ciminello. This past October, Hailie underwent a “double eye procedure for problems caused by her hydrocephalus.”

“Besides (her visits every six months to) Dr. Fried, Hailie … gets an MRI with IV sedation every six months to make sure there is no tumor regrowth and to check that the shunt is functioning properly,” her mother said.

Pediatric Hydrocephalus Foundation (PHF) selected Halie to be one of two children to serve as 2014 Face of Hydrocephalus Awareness to help spread awareness across the United States for the condition.

“There’s no way to say thank you. Every time I see Dr. Fried and say that, he answers with a smile and ‘this is my job,’ ” Melody said. “But he and the other doctors I’ve seen at ANA are amazing. They don’t have to do their job with such compassion. They care. Hailie is more outgoing. She runs and laughs alongside her sisters while we watch. To see that is a feeling you just can’t describe.”

Andrew Sutton is an editorial intern with the Courier News, Home News Tribune and MyCentralJersey.com

Source:

We will randomly select ONE male and female from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

The 2 winners will be awarded $250.00 donations in their name to a 2015 Hydrocephalus Research Project & a 2 NIGHT STAY @ the Crystal City Embassy Suites in Washington DC during our 5th Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/20 & 8/21 in 2015, (travel not included).

To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

Contest ends 12/31/2014 & Winners announced on 1/2/2015
* Email your picture to mike@hydrocephaluskids.org
* Previous winners are not eligible.
* PHF Board Members & State Chapter Directors ARE eligible to participate.
* By submitting a photo, you agree that the picture may be used in promoting this contest, promotional materials for the PHF, and other PHF outreach campaigns.

Check out the picture galleries of everyone nominated:

HARTSELLE, AL (WAFF) –
The Hartselle Police Department gave because they didn’t shave.

Officers put the razors away for “No-Shave November” to raise more than $3,000 for the Alabama Pediatric Hydrocephalus Foundation.

Their inspiration is 3-year old Reagan Roberts. She suffers from the condition. And she’s the daughter of Hartselle Officer Kel Roberts and his wife, Danielle.

“It’s been heart warming to know that they could come together and serve us as a family, as a foundation, and most of all, for our daughter,” Danielle said.

You won’t see the officers with beards for awhile. They are against Hartselle PD policy… except during No-Shave November.

Source:

The Hartselle Police Department raised $3,070 with a No Shave November fundraiser for the Pediatric Hydrocephalus Foundation.

This was the second year for the HPD to participate in a No Shave November fundraiser. Last year’s fundraiser benefitted Crisis Services of North Alabama and collected $2,065.50.

Sgt. Kel Roberts was the one to suggest the fundraiser benefit the Pediatric Hydrocephalus Foundation this year. His 3-year-old daughter Reagan was born with hydrocephalus. She has already had three brain surgeries and has a shunt in place.

Each participating officer was allowed to waive the no-facial-hair policy if they raised at least $100 for the organization. Eleven officers competed to see who could earn the most money and who could grow the best beard.

The grand prize was a 12-gauge HNR Pardner pump shotgun supplied by Hartselle’s Walmart.

Roberts was the overall winner with $1,210 worth of donations. He is deferring his prize to the next competitor Ofc. Chip Reynolds, who was second with $455. Ofc. Michael Holiday was third with $250.

Roberts said he and his wife were overjoyed about the amount the department raised.

“I am just extremely excited, tickled really, that we met our goal of $3,000,” Roberts said. “We knew that this goal was a little high compared to last year, especially since we had less officers participating this year, but it really shows how everyone pulled together and did their part.”

Roberts said he was very proud of the participation of his fellow officers.

“The funds they were able to raise shows a lot about this department,” Roberts said. “I’m really proud to be a part of this department. They are really a great group of people.”

Roberts’ wife Danielle accepted the check from the HPD on behalf of the Alabama chapter of the Pediatric Hydrocephalus Foundation Tuesday.

Roberts and his family were very glad to be able to spread hydrocephalus awareness to their community.

“It’s not even about the money to us,” Roberts said. “We are so thankful for the generous donations from businesses and individuals from the community, but we are also thankful that everyone is helping us spread the word. Our community now knows more about hydrocephalus, and that knowledge is helpful. It really means a lot to our family but also to hydrocephalus research and technology to put towards a cure.”

Source:

The Hartselle Police Department raised $3,070 during its second annual No Shave November fundraiser.

Proceeds will go to the Alabama chapter of Pediatric Hydrocephalus Foundation. Hydrocephalus is a condition that causes an excessive amount of cerebrospinal fluid to collect in the brain.

The most common treatment for the incurable condition is a shunt that drains fluid from the brain into another part of the body where it can be absorbed naturally. The accumulation of the fluid creates potentially harmful pressure on the tissues of the brain.

The foundation was chosen as this year’s donation recipient to support Sgt. Kel Roberts whose 3-year-old daughter, Reagan, was diagnosed with Hydrocephalus at 16 weeks gestation.

“Our doctors told us that we could terminate the pregnancy, but decided to put our faith in God and through with it,” said Roberts, who is the co-chair of PHF. His wife Danielle is the chairwoman.

Robert’s said the condition slightly affects Reagan’s motor skills, but not her intelligence. So far, she has had three brain surgeries to replace shunts.

“I think the people around Reagan have been impacted more than she has,” Roberts said. “She is a happy child and is ray of light for our entire family.”

As a parent, Roberts said the hardest part is not knowing what tomorrow holds.

“We’re always on guard because we never know if something as simple as the common cold is a red flag that something is wrong,” he said.

Source: