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.”

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.”

2-Year-Old from St. Charles, Michigan Annalise Strasel Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

St. Charles, MI- Annalise just turned two on January 6th, her age now matching the amount of life-saving brain surgeries Annalise has survived. Annalise was born with Hydrocephalus, an incurable brain condition, the number one cause of pediatric brain surgery, which is the only treatment option.

Annalise was diagnosed in-utero and had her first brain surgery at just a couple of days old to place a shunt in her brain, a medical device that helps move and drain the excess cerebral spinal fluid from the brain. Because of an infection soon after, Annalise had her second brain surgery, where the first shunt system was replaced with another. The shunt has one of the highest failure rates of any medical device.

Annalise 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. Annalise, whose family lives in St. Charles, Michigan, will represent the girls, while 11-year-old Aiden Smith, also from Michigan, will represent the boys.

Annalise enjoys being read books. She loves anything electronic. She loves video calling family and playing with Fisher Price Little People. Last summer she was able to ride her “neigh” as she calls him for occupational therapy. She adores any animal, but mainly horses and dogs.

Annalise’s Mom Nicole shared her thoughts about her daughter being named the National Ambassador of Awareness for the Hydrocephalus Community; ” It is an absolute honor for Annalise to be chosen. We are so excited for this opportunity.

As Annalise’s mom, I am always advocating for her and her condition with hydrocephalus. Our hopes are to raise awareness for hydrocephalus as we didn’t know the condition existed until Annalise was diagnosed.”

10-Year-Old Isaiah Donaldson Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

It has been nearly 11 years since our lives changed forever. We were so excited, on our way to find out if we would be blessed with a boy or girl. Our biggest concern was the name. I remember it just like a movie, sitting in the office and finding out that we are having a BOY!!! And then the SILENCE it seemed to last forever….. the doctor said something isn’t normal. From that point on all I remember is hearing the word HYDROCEPHALUS and that we needed to be seen for more tests immediately. I knew that hydrocephalus was “water on the brain” but that was it.

I remember sitting in the parking lot of the office crying hysterically in my husband’s arms. Within the next few days we had an MRI done at Nationwide Children’s Hospital. This was the worst day of my life. The neurosurgeon said that our child had a very severe case, quite possible the worst he had ever seen. He told Steve and I that our son would NEVER WALK TALK OR COMMUNICATE in anyway, we would be changing diapers for the rest of our lives. He suggested that we “just try again” Of course that was never an option!! And we never saw that doctor again.

4 months later we were blessed with the most precious little boy in the entire world, our sweet Isaiah. About 2 months before he was born I had a dream that I was holding a beautiful baby boy in my arms. He had curly dark hair and the most amazing blue grey eyes. In my dream I knew his name was Isaiah….which means God is salvation. I am BLESSED to have been chosen to be Isaiah’s mommy and thank God every day that he was given to me.

Isaiah spent 45 days in the NICU. He had a VP shunt placed when he was just 9 days old. He still has his original shunt. He has never had a replacement or revision. We continue to have routine MRIs and monitor closely. We recently learned that his shunt is no longer in its original placement position and he has slit like ventricles. We know that this can lead to another brain surgery, and another and another. And we NEED A CURE!

Isaiah loves Thomas the Train and video games. He is an amazingly creative artist, who loves to make his own Marvel Mash Ups. He always has a smile on his face and is the best big brother. He is rocking out 5th grade and even made the Honor Roll. Isaiah is super excited and honored to be the 2022 Hydrocephalus Ambassador and can’t wait to help spreading awareness. He hopes that he can share his experience and help other kids, showing them how to be brave and to never ever doubt your abilities.