Hydrocephalus Stories from Our Community

Read stories of people living with hydrocephalus. These amazing individuals are living life to the fullest regardless of the challenges their condition brings. Want to share your own story of resilience?  Learn More

Lars, toddler with hydrocephalus

Lars, 20 months

Congenital hydrocephalus from a brain bleed

Lars spent 114 days in the NICU and went through 6 surgeries while there.

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Merlin, 60

Normal Pressure Hydrocephalus
International Flight Attendant

At this point I was having problems walking, lost my short term memory and I had incontinence all associated with Alzheimer’s…I only weighed 84 pounds.

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Brianna, 8

Acquired hydrocephalus from a brain injury from being shaken
Elementary School Student

Brianna is the greatest gift we could ever ask for. We consider ourselves the very proud parents of a survivor who wants to and will change the world.

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Congenital hydrocephalus

Danielle, 41

Congenital hydrocephalus
Travel Consultant

We were called into the auditorium and I sat with my class while my mother told them everything; from birth through that day. I cried, but not by myself. The principle, teachers, and students cried with me and I gained friends that are still with me today.

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Congenital hydrocephalus

Diane, 23

Congenital hydrocephalus
5th grade teacher

Over the years, I have learned many lessons. I have learned who I was, what can come of reaching for the stars and never taking no for an answer.

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Acquired hydrocephalus

Matthew, 35

Acquired hydrocephalus from a brain bleed
Security Officer

I am married with 5 kids, working and doing things that doctors thought back then would not be possible.

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Kid with hydrocephalus

Emma, 8

Acquired hydrocephalus
Third Grade Student

You learn that every time you think you know what to look for, you know how to be proactive, you know how to know that an episode is coming…you find out you don’t really know. You find out that as she grows, as she gets bigger, that things change. Every day is a learning experience.

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Congenital hydrocephalus

Greg, 39

Congenital hydrocephalus
Bank Manager

It is part of who I am. It changes the way I do certain things but it does not define who I am as a person.

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Teenager with hydrocephalus

Carly, 22

Acquired hydrocephalus from a brain bleed
High School Senior

Carly is a successful senior in High School who hopes for no more brain surgeries. Shunts quit; she doesn’t!

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Elliott, 6 Months

Congenital hydrocephalus
Baby extraordinaire!

Elliott is now 6 months old, and he continues to amaze us everyday with is abilities and determination

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