5-Year-Old from New Jersey Eleanor DeJulio Selected as 2025 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Annandale, NJ- Eleanor was born prematurely at just 24 weeks and weighed less than two pounds. She spent her first 149 days in the NICU. Eleanor acquired hydrocephalus due to a hemorrhage in the ventricles of her brain because of her extreme prematurity. She had her first brain surgery at 1 month of age involving the placement of an Ommaya reservoir. This temporary shunt enabled the NICU team to regularly draw cerebrospinal fluid (CSF) and regulate pressure in her brain.

At 3 months old, Eleanor had grown sufficiently to permit the placement of a ‘permanent’ VP shunt. Despite having ongoing challenges and requiring physical, occupational and speech therapies, Eleanor is a very happy and healthy 5-year-old girl. She has always been a people person, and her smile is the first thing you’ll see and what you’ll remember about Eleanor.

Eleanor is an outgoing young girl. She loves school, music, books, wagon rides and playing with her siblings. Her favorite color is yellow.

Eleanor shares a special bond with her older cousin, Jessica. Jessica also has hydrocephalus. The DeJulio family has been supporting the PHF long before Eleanor was born.

Eleanor’s parents Katie & Richard add that “Eleanor is a fighter and has been since she took her first breaths. We’ve been blessed with so many wonderful people on Eleanor’s “team” from doctors, nurses, therapists, teachers, family, friends and the PHF.

This organization is fighting for her and all other children that are facing the uncertainty of Hydrocephalus. We couldn’t be more excited for Eleanor to be the 2025 ambassador.”

Eleanor will be featured in advertising campaigns & promotional materials for Hydrocephalus Awareness as we head towards “National Hydrocephalus Awareness Month” in September.

Owendale, MI- Landon was born with congenital Hydrocephalus. We had just become foster parents in April of 2014. In September of 2014 we got the call for a little boy who needed a home but had extensive
medical needs. We had no experience with anything like this and had no idea what to expect. For reasons I didn’t understand my heart was being pulled to meet Landon and speak with his doctors.

It was instant love, and I began the training we needed to be able to bring Landon home from the NICU.

A few short days later we brought Landon home. We continued to learn about his medical condition, special needs, and how to provide the care he required. We had several bumps in the road. He required numerous surgeries and appointments at the University of Michigan Children’s hospital.

That did not stop Landon from being the happiest and most loving boy! He truly loved life and being the center of attention.

In June of 2017 Landon was granted a Make a Wish trip to Disney to meet his all-time favorite, Mickey Mouse. His dream came true, and he got to meet Mickey and all the princesses. He was so incredibly happy. In July of 2017 we were officially able to adopt Landon, and he became a part of our family forever.

In August of 2017 Landon became very sick and the doctors at the University of Michigan Children’s hospital were not able to get his shunt to work properly. Landon lost his life to Hydrocephalus. When Landon’s work on earth was done, he continued his legacy by passing on The Gift of Life through organ donation. He was able to help two children through organ donation.

It has always been our goal as his parents to raise awareness for Hydrocephalus for our sweet boy and those still fighting the fight. Since 2017 we have attended the annual Pediatric Hydrocephalus Foundation Walk in his honor and Team Landon has raised funds to help Hydrocephalus research.

Even though Landon is not here with us on earth he is continuing to live on through our memories of this sweet, brave, unforgettable little boy. We may no longer be able to hold him in our arms, but we will always hold him in our hearts.

Our precious Landon taught us more about courage, love, and sacrifice than many people do in their entire life.

“Sometimes superhero’s live in the hearts of small children fighting big battles.”

Though he’s gone, his love and legacy will live on through us all.

We are so grateful for the beautiful memories we shared with Landon, and his spirit will forever remain in our hearts.

Occurring 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 tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives. Left untreated, Hydrocephalus can be fatal.