Our Hydrocephalus Stories

Brianna, 23

I have felt that over the years hospitals have become my “home away from home.” My life started in the operating room at Stony Brook Hospital, and I spent the first year of my life in the Pediatric Intensive Care Unit. CT scans, IVs, and surgeries marked the beginning of my life. Just when my […]

Marcos, 24

I was originally scheduled to be born on Independence Day, but decided to pull what I’ve always deemed the ultimate prank and come into the world on April Fool’s Day at 26 weeks, weighing only 1 Pound, 8 Ounces. Imagine trying to call your family to tell them your first son was born, only not […]

Eric, 23

My perception of hydrocephalus has changed. I no longer view it as a limitation nor a difference to be scared of, but a unique quality that brings out my greatest strengths while nurturing my weaknesses.

Lynn, 54

What happens if you wake up one morning to crippling headaches and learn that you’ve had hydrocephalus your whole life? That’s what happened to Lynn. After some ups and downs, her hydrocephalus diagnosis inspired her to live life with purpose and help others however she can.

Michael, 27

“I use my #hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness. There are all kinds of survivors. I’m a medical survivor and a self-described ‘fighter with the soul of a peacemaker.’”

Lola, 30

Today I’m happy that the good days still outnumber the bad days. My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition.

Max, 3

“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”

In Memory Of Skylene, 10

“Skylene saved the lives of 5 individuals through organ donation. She was the most giving person. If she knew she gave this gift of life she would be so proud!” Read Skylene’s story, told by her mom.

SYS - Ft image Mary Sullivan

Mary, 57

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

Tracy, 38

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

Rafael, 27

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

Abby, 22

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with Hydrocephalus or any other challenges that you may face.

Cayden, 11 months

Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.

Deborah, 59

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

Gabrielle, 25

My Hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

Alexsis, 18

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

Vincent, 12

As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition!

Luna, 18 months

Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!

Hiro, 22 months

Hydrocephalus. I had never heard of the word and it sent me into a panic. The next day we named him Hiro, which means vast  in Japanese, we thought the name was very fitting!

Wylie, 6 months

Aqueductal Stenosis

Family members and friends remained very confused about her condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.

Olivia, 7

Olivia had Grade III intraventricular hemorrhages (IVH) – or brain bleeds – in both ventricles. Today she is a beautiful 7 year old who has the ability to open doors that will lead her over new horizons.

Wyatt, 18 months

Congenital Hydrocephalus.

He’s the funniest, sweetest, most caring and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.

Christopher, 46

Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.

Blair, 38

The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.

Philip, 44

I was born with an eye condition called Congenital Toxoplasmosis. During the 1970’s doctors did not know much about the Toxoplasmosis condition. However they now know this condition does more damage to the body than just the eyes

Lyra, 3

This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.

Matthew, 9

Matthew needed additional brain surgeries to move the catheter into his ventricle where, unless a cure is found, it will stay for the rest of his life. 

Maylee, 16 months

Maylee has an amazing, happy little personality despite all she’s been through.  She is truly a tough little hydrocephalus warrior!

Logan, 9

In the end, we had no answer to what caused Logan’s acquired Hydrocephalus but it didn’t matter, he can do anything he puts his mind to and Hydrocephalus will not stop him!

Heather, 30

An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!

Kaine, 9 months

On Jan. 22 my water broke with my second child. The problem: He wasn’t due until March 10!

Charlie, 11

We had to make the decision to either deliver the boys to save baby ‘B’, or let him go, so that the other two could keep growing. We chose to deliver.

Taelley, 2 1/2

My identical twin girls Taelley and Pelley were born at 26 weeks 6 days. Too early!

Ziler, 5

Aqueductal Stenosis
At two and a half years old it was determined her ETV was not working any longer. She had her first shunt placed and a month later had her first revision.

Livia, 8

Brain surgery is scary stuff.  A new baby is scary stuff.  3 months in the NICU and spitting in the face of death are all scary stuff.  Together they are absolutely petrifying.

Annelise, 18 months

Aqueductal Stenosis

“During an emergency 18 week scan after sustaining a blow to my tummy, the technician had a very worried look on her face.. It was there my fears went from bad to worse.”

Blythe, 10 months

I had a very typical pregnancy with Blythe. She is my third child an not unlike her brothers. Blythe Raye was born at 40 weeks on October 24, 2016 weighing 7 pound 11 ounces.

Robbie, 1

The words that stuck in my head were “there is still time to terminate the pregnancy”, but one thing that was certain was that God gave us this little boy and we were going to do everything in our power to bring him into this world and shower him with love.

Noelle, 5

Noelle’s is almost five. Thankfully her post surgery journey has been uneventful.
We are determined to continue to raise awareness for Hydrocephalus and help those impacted as much as possible.

Lucy, 17 months

Aqueductal Stenosis

When Lucy woke up from surgery, she looked right at us and we couldn’t believe the immediate changes. A year later, we are revision free, she is doing wonderful and she is meeting her milestones.

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