PHF NORTHEAST WALK for Hydrocephalus Research 2025

Meet Ellery: A Warrior’s Journey with Hydrocephalus

When you’re expecting your first child, your mind is filled with dreams of all the first....first words, first steps, first birthday with family and friends. You never imagine you will hear the words, “Something is wrong.”

On December 29, 2015, during a routine 20-week ultrasound, our world changed forever. The scan revealed excess fluid on our baby’s brain—hydrocephalus—and a potential heart defect. I will never forget the doctor saying, “Two things are wrong.” It felt like a brick was lodged in my throat as I held back tears, I felt the rush of panic physically take over my body.

The weeks that followed were a blur of tests, consultations and doctors presenting us with “options"...OPTIONS I knew in my heart I could never choose. Instead, we chose to have faith.... We chose to trust God plan for Ellery’s life, and we prepared ourselves to fight alongside her from the moment she entered this world.

On May 3, 2016, Ellery arrived, simply perfect, with the longest pianist fingers I had ever seen. Just two days later, she had her first brain surgery to place a shunt to drain the excess fluid. We hoped & PRAYED this surgery would fix everything, but the fight was just beginning and this tiny Warrior would require supernatural strength to endured the coming years.

At just three months old, during what was supposed to be a routine MRI, we were told the shunt had over-drained, causing a brain hemorrhage, and Ellery needed emergency surgery. From this day on, we would face an onslaught of health challenges and hospital stays. Ellery underwent 3 more brain surgeries one of which was needed due to meningitis infecting the shunt. This surgery required a complete extraction of the shunt, treatment of the infection and then another surgery to implant a whole new shunt, in a 2 year span she had 24 hospitalizations, countless shunt taps, a battle with meningitis, 3 central lines, a blood clot, was flown by helicopter to CHOP in Philly and even spent 2 weeks in rehab due to the severity and damage caused by the 3rd shunt surgery...  

Between 2016 and 2018, Ellery endured what seemed like a lifetime of illness. She lived more in a hospital than in her own home, yet she faced everyday with a joyful spirit inspite of her illness and discomfort. With all the hospital stays and surgeries, milestones were significantly delayed but Ellery fought on. She spent every known holiday in the hospital but again her happy demeanor never waivered. Every time we felt down, we would look at her and see God's grace in her life and we would gather ourselves,  rise up and keep fighting too... Ellery became a regular at Morristown Hospital and won over the hearts of doctors, nurses and staff with her resilient & cheerful spirit. She has inspired her mommy, our family, friends, neighbors and pretty much anyone who has come in contact with her. 

The battle did not stop there....In 2018, Ellery began experiencing seizures, and shortly after, another diagnosis AUTISM. I remember leaving the doctor’s office in total shock, even missing my exit home (on a ride I could have done with my eyes closed). The weight of yet another diagnosis crushed me but later that evening her neurologist called to give me a HEAVEN SENT PEP TALK. That talk was just what I needed to accept the diagnosis and to shift my focus on Ellery's care and the therapies needed to help her progress. We continually kept placing our faith in GOD and we knew with certainty that GOD was working all things for our good and he has done just that!!!

Ellery’s journey has been nothing short of miraculous...actually it's been one miracle, after another.. She learned to walk at almost 3 years old. After years of no eye contact she regained eye contact a day before my birthday—a birthday gift I will never forget..I wept uncontrollably. All her heart issues resolved and we were fully discharged from cardiology for good. She started school and has excelled, she's traveled by plane to Atlanta, Puerto Rico twice and Dominican Republic, Last year she was chosen as the 2024 Ambassador for the Pediatric Hydrocephalus Foundation, featured on LindenTap and honored at the PHF Walk at Yelecsics Park, she recently took her first long distance road trip to Savannah GA & Charleston SC, and her favorite place to go is CHURCH.  She has found a loving family in our church members and she loves every minute of each service she attends. Though she remains nonverbal, Ellery understands everything and communicates in ways words never could. She reads, does math, navigates technology like a pro, and even told her first fib on her AAC device (lol!).

Ellery is full of life—strong, intelligent, joyful, and, at times, adorably bossy. People often ask how I have managed (as her mom), but the real question is how has Ellery endured with such grace, strength and happiness. The answer is simple: God’s hand has been with us every step of the way.

Today, we invite you to join Ellery in this fight.

Hydrocephalus is a lifelong condition with no cure—yet. Our goal is to raise funds for the Pediatric Hydrocephalus Foundation (PHF) research so that no other child or family will have to face the relentless challenges we have endured.

Your support will directly contribute to critical research, bringing hope to thousands of families while honoring Ellery’s unyielding spirit.

Please, help us continue this fight.

Donate today, share Ellery’s story, and stand with us as we believe for a future where Hydrocephalus no longer steals childhoods and hope from families.

From our hearts to yours, thank you for reading, for caring, and for standing with our warrior, Ellery.

God bless you.