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.”