Brenna’s life was turned upside down after she developed hydrocephalus six years ago. But after undergoing brain surgery for a shunt, she refused to let her condition stop her from enjoying the outdoor adventures she always loved.

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I was diagnosed with hydrocephalus at the age of 7 years old and had my first shunt on August 14, 2007. Doctors told me I was going to live with a shunt for the rest of my life but Aug. 20th 2020 is the 10th anniversary of being shunt free!

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Brianna grew up in and out of the hospital. That’s when she found her passion of becoming a pediatric nurse. Now she’s about to achieve her childhood dream.

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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.

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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.

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“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.”

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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.

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

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“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.

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SYS - Ft image Mary Sullivan

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.

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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.

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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!

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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.

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

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

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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.”

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

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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!

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

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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!

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