By Donna Eleazer Published January 31, 2024 at 4:11 PM

Linden, NJ – 7-year-old Linden resident Ellery Mendez has been selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness, for Incurable Brain Condition to help raise the level of awareness and education about Hydrocephalus in the United States. Ellery will represent the girls, while 4-year-old Sawyer Taylor from Alabama, will represent the boys. ” Ellery will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards “National Hydrocephalus Awareness Month” in September,” said Michael Illions. PHF, Inc.

Hydrocephalus occurs in approximately 1 of every 500 births and in over one million Americans today, Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissue. Because of lack of advancement in treatment, many affected individuals are left unable to lead full and productive lives. Untreated, Hydrocephalus could be fatal.

Yolanda Mendez, Ellie’s mom, shared with Tap into Linden her thoughts,” She is always happy. She was born a fighter. Throughout all her medical battles, which include 4 brain surgeries, Ellie has not only inspired me (her mom) but she has been an inspiration to all of our family, friends, medical staff and anyone who she encounters.” She has such a will to live and can teach every single one of us a lesson about living every day with peace and overflowing joy. Her battle continues as she is non-verbal and communicating her needs and wants can be a challenge, especially when she is not feeling well., said Yolanda.” However, as a family we tirelessly continue to look for new and innovative therapies that help her in her journey forward!

Currently, Ellie attends P G Chambers School in Cedar Knolls. She is non-verbal and has begun training on a communication tablet that will enable her to communicate and express her needs to her family.

The Pediatric Hydrocephalus Foundation, a volunteer-driven non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 15 state chapters, provides support to families, friends and children affected by this incurable brain condition. PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure.

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.”

4-Year-Old from Huntsville, Alabama Sawyer Taylor Selected as 2024 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Huntsville, AL- “Your son either has a brain tumor or best-case scenario, he may have Hydrocephalus.” That was what a doctor told Kyla Taylor at her son Sawyer’s 4-month checkup in 2020. After confirming Hydrocephalus was the diagnosis, Mom, Dad & Sawyer packed up their car and drove to Tennessee’s Vanderbilt Children’s Hospital for brain surgery. Because of Covid-19 protocols, Sawyer’s father wasn’t allowed in and spent the entire time in their car and parking garage.

Sawyer was born at 31 weeks at 5lbs and 15oz. Thankfully, he did not require any oxygen, as he was able to breathe on his own. However, Kyla was concerned that Sawyer’s forehead was bulging, and had almost a square shape to it. Her concerns were dismissed, and everything would be fine. After being discharged and having a pediatrician visit a few days later, Kyla once again inquired about Sawyer’s forehead, which now seemed worse, but again was told there was nothing to worry about. As days and weeks went by, Sawyer’s head circumference was getting bigger and symptoms were starting to present themselves in addition to the continued head growth, until finally, a doctor told Kyla “Your son either has a brain tumor or best-case scenario, he may have Hydrocephalus”, and Sawyer’s journey began.

Sawyer 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. Sawyer will represent the boys, while 7-year-old Ellery Mendez, from New Jersey, will represent the girls.

Sawyer loves books and playing outside, but his biggest passion lies with Dinosaurs. Sawyer loves dinosaurs and can properly name and identify literally every single one, including his favorites Brachiosaurus, pachycephalosaurus, triceratops, stegosaurus, ankylosaurus and T-Rex.

Sawyer’s Mom Kyla shared her thoughts about her son being named the National Ambassador of Awareness for the Hydrocephalus Community; “Sawyer is absolutely our little hero, and we are honored at the potential of him being a hero to others as well.”

Student Isabella Sacharczyk Speaks About the Importance of Internships

“It fell into my lap,” Isabella Sacharczyk ’24 said about her first internship at the Boston Children’s Hospital. “One introduction blew my mind.”

Of course, this would begin a process of many internships Sacharczyk would undertake. Sacharczyk struggles with Hydrocephalus, a disorder of the brain caused by buildup of cerebrospinal fluid. Too much of this fluid puts pressure on the brain tissues, eventually leading to headaches, vision problems, poor cognition, and if not caught or treated, can result in much more serious neurological symptoms—even death.

Isabella said her parents were told by doctors that she would never walk, talk, or see. Now, and twenty-three brain surgeries later, she’s a thriving student at Westfield State and is pursuing a career in medical research so that she can help find more efficient ways to treat or even cure Hydrocephalus.

During the course of several internships, Isabella began working with the Pediatric Hydrocephalus Foundation, at which she is also a member and spokesperson, raising up to $20,000 a year. “Every dollar goes to research,” she said. “No one knows what Hydrocephalus is. It’s pretty invisible. There’s such a need for research and advocacy… I want to be part of this.”

Sacharczyk originally wanted to pursue a degree in math. She wanted to teach, as her favorite math teacher had also attended the Westfield State. Instead, she ended up attending the university and then accepted internships with Boston Children’s Hospital, as well as with Baystate Medical Center, finding what she described as her “niche”. She strongly advised that students with the opportunity should do the same.

“Don’t be afraid to change your mind. Allow change. Life isn’t set in stone, so be open to who you are.”

Giselle Frechette, associate director of the Career Center, also commented on the importance of internships and how they can shape a student’s future trajectory. “As a career counselor, my life’s passion is helping others discover their passion and purpose in life. It is the greatest feeling helping students realize their dreams and land opportunities that set them on a path for success,” she said.

“Bella Sacharczyk is a prime example of a student with a mission in life. Despite having Pediatric Hydrocephalus, she won’t let anything prevent her from realizing her goals through internships and networking. Her fervor to educate others on Pediatric Hydrocephalus is contagious, and I am so impressed by her tenacity. I can’t wait to see where life leads her next!”

When asked what the most compelling part of her internships have been, Isabella was quick to answer. “The sense of community. I wasn’t sure about research… connection is the biggest [part]. If you find your niche, an internship might lead you to really, really great things.”

For now, she plans to finish up at Westfield State and then move on to graduate school where she will continue to study biology and pursue medical research.

11-Year-Old from Rossville, Michigan Aiden Smith Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Roseville, MI- Just 11 years old and already a four-time brain surgery survivor, Aiden developed an incurable brain condition known has Hydrocephalus, which is the number one cause of pediatric brain surgery, which is the only treatment option.

Aiden is a former 28-weeker, and a twin. He was born 9/26/2011 in Detroit. He spent 4 months in the NICU at the hospital he was born at and then was transferred out to Mott Children’s Hospital at the University of Michigan where he was for another 3 months before coming home for the first time a day before he turned 7 months. Unfortunately, Aiden’s twin sister Elise was stillborn, and his older sister Amelia also passed away, she was 23.6 weeks. Due to the prematurity, Aiden was resuscitated at birth which was what started his medical journey. Due to being resuscitated, Aiden developed epilepsy, cerebral palsy and hydrocephalus.

Aiden 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. Aiden will represent the boys, while 2-year-old Annalise Strasel, also from Michigan, will represent the girls.

Aiden enjoys music, swinging, swimming, biking, going for walks. He has been to a Detroit Lions pre-season game, Detroit Pistons games, Disney on Ice, Sesame Street Live, University of Michigan football and a couple Detroit Tigers games.

Aiden’s Mom Andrea shared her thoughts about her son being named the National Ambassador of Awareness for the Hydrocephalus Community; “This is a great honor as many do not know about hydrocephalus and it allows us to bring awareness and share Aiden’s journey. As with many other medical conditions, others think it defines a person, but it doesn’t. It is part of them and is part of who they are today.”