Our Hydrocephalus Stories

Adult with hydrocephalus

Sandy, 58

Congenital hydrocephalus
Receptionist/Secretary

Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!

Toddler with hydrocephalus

Layla, 2

Congenital hydrocephalus

Layla was born with an Occipital Encephalocele which caused her hydrocephalus. She’s a happy toddler, hitting her milestones and bringing joy to her family after a successful shunt placement.

Teen with hydrocephalus

Edgar, 17

Congenital hydrocephalus
Senior in High School

Because of my undying passion for aviation, I am planning to attend college to pursue an aviation Science major.

Young adult living with hydrocephalus

Brianna, 17

Congenital hydrocephalus with Dandy Walker Syndrome
Senior in High School

With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

Cohen, young boy with hydrocephalus

Cohen, 20 months

Congenital hydrocephalus

Cohen was born with hydrocephalus and later diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. But it does not stop him from being every bit of wonderful!

Robert, congenital hydrocephalus

Robert, 41

Congenital hydrocephalus
Grocery Clerk

At two weeks of age, I had my first shunt placed. I have been blessed to be alive for 41 years and counting.

Travis , adult with hydrocephalus

Travis, 28

Acquired hydrocephalus from a brain bleed
Bachelors in Social Work, currently not working

Throughout my lifetime I’ve had three types of shunts and seventy plus shunt revisions.

Young boy with hydrocephalus

Oliver, 4

Acquired hydrocephalus from a brain tumor

He doesn’t let any of this slow him down. He loves going to preschool, and playing with his little sister, Kate.

Young adult living with hydrocephalus

Melinda, 30

Congenital hydrocephalus
Occupational Therapist

In the summer of 2013, my symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

Young adult living with hydrocephalus

Jessie, 19

Acquired hydrocephalus from a brain bleed
College Student

I’ve decided to share my story in the hopes that by talking, we can end the negative stigma around differently-abled people.

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.

Share Your Hydrocephalus Story

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.

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.

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.

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.

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.

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.

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.

Teenager with hydrocephalus

Carly, 17

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!

Share Your Hydrocephalus Story

Elliott, six 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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