7-Year-Old from New Jersey Ellery Mendez Selected as 2024 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Linden, NJ- Ellery was born in May 2016 with severe congenital hydrocephalus. At 2 days old, Ellery underwent her first of several brain surgeries to place a shunt in her brain, a medical device that helps move and drain the excess cerebral spinal fluid from the brain, and then remained in the NICU for 16 days, before being able to go home, where everything was going well for a few months.

In September 2016 she underwent brain surgery number two, but months after the surgery something was still off and Ellery did not show much improvement, but rather continued to decline in health. For the next year, hospital admissions and brain surgeries were all too common. Such is the life dealing with Hydrocephalus.

Ellery was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Ellery, whose family lives in Linden, New Jersey, will represent the girls, while 4-year-old Sawyer Taylor from Alabama, will represent the boys.

Ellery loves the Gipsy Kings, especially the song VOLARE (which means to SOAR). She loves technology, (phones & tablets), and she loves when her mom reads to her in an animated way. She has quite a large book collection and is a real pro at navigating YouTube where Ellery loves watching all of Patty Shukla’s videos on singing & signing.

Ellery’s Mom Yolanda shared her thoughts about her daughter being named the National Ambassador of Awareness for the Hydrocephalus Community; ” We are honored and thrilled to have Ellery represent the fighting spirit of PHF. As a family, we have participated in many of the PHF Events and fundraisers. Ellery has been hospitalized over 20+ times, having spent many holidays and special occasions in the hospital. Throughout it all, she has had the strength of a true champion. While everyone around her is worried and concerned, Ellery has smiled through it all, as you see in the photo, which is exactly how Ellery tackles every single day. She is the happiest little girl in-spite of her daily challenges.”

Jennifer Westdyke of Edison found out her son Jeffrey likely had hydrocephalus when she was 20 weeks pregnant. Her son, now 9, has battled the disease since birth, undergoing his first brain surgery when he was 3 years old and another two since then.

To raise awareness about this incurable brain condition, the Westdyke family is hosting a Funding a Cure for Hydrocephalus Pasta Dinner with the Pediatric Hydrocephalus Foundation on Sunday, Nov. 22, from 2 to 6 p.m. at the Edison Elks 2487 at 375 Old Post Road in Edison.

Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain, according to the National Institute of Neurological Disorders and Stroke. Some people think of hydrocephalus as “water on the brain;” however it is actually cerebrospinal fluid — a clear fluid that surrounds the brain and spinal cord, according to the institute.

Hydrocephalus can be acquired or congenital. The congenital form is present at birth and may be caused by either genetics or events that occurred during fetal development. Acquired hydrocephalus can develop at the time of birth or at some other point after because of injury or disease.

“There hasn’t been any new technology in a long time,” said Westdyke. “They are still using the same shunt technology from the 1950s.”

She said compared to others with the disease, her son has been fortunate; he is highly functioning, attends regular classes in school and hadn’t had many surgeries. “My son is not the norm. There are many children who have had 30 or 40 surgeries and have had many other problems as a result,” she said.

Hydrocephalus is generally treated by surgically inserting a shunt system that diverts the flow of cerebrospinal fluid to another area of the body where it can be absorbed as part of the normal circulatory process.

The family’s goal with the pasta dinner is to raise awareness about the disease and money to help research.

“Hydrocephalus is an incurable brain condition that affects one in ever 500 newborns, and over a million Americans,” she said. “Adults affected include veterans coming home and football players with head injuries.”

The pasta dinner will feature homemade food, entertainment and more.

“My mom and I rolled 500 meatballs, and my friend makes a great salad that everyone comes back for more,” along with homemade desserts, she said. “We have a DJ, face painting, basket raffles, a 50-50 and vendors, who donate profits. It should be a very fun evening.”

There will be a special appearance by MJX & The 2 Bad Crew Special Needs Dance Class.

It’s all you can eat, and tickets are $10 per adult and $5 per child (4 and younger are no charge).

The Pediatric Hydrocephalus Foundation was founded in New Jersey in 2009 by four families, each having a child with this incurable brain condition, said Michael Illions, the organization’s vice president and director of advocacy. The non-profit charitable organization’s goal is to raise awareness about hydrocephalus and provide support to families, friends and children affected by the condition.

“This is our fifth dinner to raise money,” he said. “We have been very successful in the past, drawing professional wrestlers doing autograph signings, dignitaries, even members of congress. The money is used for research. All of the money goes to that, as we are an all volunteer organization with no salaries.”

The Woodbridge resident’s son, Cole, was born with hydrocephalus, and he and his wife are among the organization’s founders.

“We are hoping to raise $5,000,” Illions added. “It’s just one of the many events we do.”

Other events include the annual New Jersey Walk & Family Fun Day for Hydrocephalus Awareness, which took place in September. This year’s drew 350 people and raised more than $27,000 to fund research projects for better treatment options and to find a cure.

“We donate to hospitals all across the country,” Illions said of how the funds raises are disbursed. “They send us research grant applications, and we evaluate each one.”

His son, at the age of 10, already has had 13 surgeries.

“It really ranges how much children are affected,” he added. “Not every child is the same. There is the possibility of global developmental delays. Some are more affected than others. My son is completely nonverbal.”

Oftentimes, too, problems occur with the shunt, and it has to be fixed or redone. Sometimes surgeries can result in development delays or other complications.

Westdyke said her son didn’t often talk about how having hydrocephalus had affected him. But earlier this year he did, when the the family traveled to Washington, D.C., to talk to staffers, congressman and senators about the disease.

“He said, ‘I’m scared that when I go to sleep at night, I won’t wake up in the morning.’” She added, “He gets it. I couldn’t stop crying when I heard that.”

For more information, visit www.hydrocephaluskids.org/wordpress/.

Tickets for the Nov. 22 dinner are available online at http://www.active.com/donate/phfpasta.

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CRANBURY — As the auditorium went dark Friday night and the excited din of audience members descended into silence, the Cranbury School’s Kindness Club got the third annual Cranbury Idol rolling and shone a spotlight on pediatric Hydrocephalus.

Several hundred people came out to offer support and serve as judges for the eight contestants, all of whom are students at the school.

Opening the show, Raegan Oake sang “Fly Before You Fall,” followed by “Are You Gonna Go My Way,” which was sung by Andy Ciardella.

Next in the lineup was Christy Phillips, who sang “Killing Me Softly,” and Isabella Ames, who performed “Love Somebody,” accompanying herself on guitar.

Julia Patella gave the crowd a taste of “Explosions,” while a rendition of “I’m Yours” was sung by Sonal Mallick.

Rounding out the program was Bay Daily, with a performance of “Remember the Name,” and Sara Reilly, who sang “Let It Go.”

A suggested $5 donation was collected at the door, with all of the proceeds going to support the work of the Pediatric Hydrocephalus Foundation.

According to the foundation, Hydrocephalus is a lifelong condition, which affects more than one million Americans, from newborns to seniors.

The primary characteristic is excessive accumulation of fluid in the brain, with the excess fluid resulting in an abnormal widening of spaces in the brain called ventricles.

This widening creates potentially harmful pressure on the tissues of the brain, according to the foundation.

Hydrocephalus is most often treated by surgically inserting a shunt system, which diverts the excess fluid to another area of the body, where it can be absorbed through the normal circulatory process.

Nationwide, an average of 40,000 shunt operations are performed each year and Americans spend more than $1 billion annually to treat this condition, according to the foundation.

Currently, there is no known cure.

According to Chief School Administrator Dr. Susan Genco, Cranbury Idol was conceived in 2013 by former Cranbury School student Amir Moon, as a way to raise money for the Children’s Hospital of Philadelphia.

In keeping with the theme of giving, the recipient of last year’s Idol proceeds was One Simple Wish, a non-profit organization that enables individuals to grant wishes to foster children.

Twelve-year-old Kylee Tucholski had a very personal reason for nominating PHF as this year’s Idol charity.

“My little brother Nicholas was born with Hydrocephalus and he was my inspiration to go above and beyond to help find a cure for Hydrocephalus,” Kylee said. “I wanted to raise awareness so I decided to use the Pediatric Hydrocephalus Foundation to work for my brother and other kids with Hydrocephalus.”

The lights came up as the last note of round one finished ringing, signaling the arrival of intermission.

Kindness Club members moved throughout the audience, distributing iPads and inviting people to cast their votes for their top three favorites before making their way to the cafeteria, where refreshments and baked goods awaited.

For Isabel Kinney, 14, and her friend Aevyn Peacock, 13, Cranbury Idol was a great way to spend Friday night.

“We love the show,” Isabel said. “We like listening to all the performers and it’s for a really good cause.”

Aevyn said that both she and Isabel are friends with all the contestants and that the show helped them see them in a whole new light.

“It’s fun seeing our friends perform like that because we’ve never really seen them that way,” she said.

Both girls said that they were surprised by how difficult it was to narrow the field and vote for their favorites.

Round two saw Julia Patella, Isabella Ames and Bay Daily vying for the title of Cranbury Idol, as they each performed a new song for the audience.

As the performances wrapped, Kindness Club members once again made their way around the room with iPads, recording votes from audience members.

With the votes in and tallied, it was time for the big reveal.

To thunderous applause from the audience, Julia Patella was named second runner-up, Bay Daily was named first runner-up and Isabella Ames was announced as the new Cranbury Idol.

“I really wanted this and I was really determined to get it,” Isabella, 11, said, as she flashed a smile. “I feel amazing!”

According to Dr. Genco, a donation in the names of all of the winners will be made to the foundation.

While Isabella, Bay and Julia may have had a good night, they weren’t the only ones.

“This was a big deal for us,” PHF Vice President and Director of Advocacy Michael Illions, said. “You can see, the turnout was unbelievable, everybody was really into it.”

Acknowledging that Hydrocephalus is not a household name in the same way that breast cancer or Alzheimer’s disease are, PHF Board Member Mary Ann D’Oria said that educating the community is vital to making headway in research.

“Most people have not heard of it and it’s a good thing to get the cause out there,” she said. “The more people become aware, then the more funding we can get.”

Mr. Illions said that he and Ms. D’Oria each have a child with Hydrocephalus and that they have had a total of 70 brain surgeries between them.

When a shunt malfunctions, fixing it always involves brain surgery, Ms. D’Oria said.

“Our children always have to have their head cut open, (and) each time there’s a risk,” she said.

According to Dr. Genco, the Kindness Club began four years ago and consists of 20 students in grades six through eight.

It takes its inspiration from the ancient Greek storyteller Aesop’s quotation, “No act of kindness, no matter how small, is ever wasted.”

The Pediatric Hydrocephalus Foundation is a non-profit 501 (c)(3) charitable organization, according to the organization’s website. It is located at 66 Caroline St. in Woodbridge, N.J.

More information on Hydrocephalus can be found at www.hydrocephaluskids.org.

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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

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