Our Hydrocephalus Stories

Ashley, 8

The doctor explained to us that Ashley’s brain was bleeding and not draining properly. She used the word hydrocephalus, which I’m pretty sure was the first time I had ever heard that word.

Felix, 1

People often ask us how we do it- how do we cope with all the surgeries? For us it is really very simple…you just do what you have to do.

“So there was not going to be a magic pill, my 8lb, one month old little girl was going to be having brain surgery.” Those were the words of Sofia’s mom when she first learned that her daughter had hydrocephalus and was going into surgery the very next day.

Robby, 11

Congenital Hydrocephalus

Robby is a happy young man with an outgoing personality and a great sense of humor.

Rylie, 3

Bilateral Subdural Hematomas- cause of bleeds- unknown

Rylie is a bright and bubbly 3 year old who loves to laugh and play.

Meryl, 2

Aqueductal Stenosis

She is an incredibly smart, active two year old with a great sense of humor.

Amanda, 22

Congenital Hydrocephalus

I am so blessed to have such a diagnosis- it makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

Davison, 30

Malformation of ventricles at birth
Integration Technician and Photographer

From that last surgery at the age of eight, I have been in great health.

Christine, 48

Ideopathic Adult-onset hydrocephalus
Physical Therapy Assistant

I view the challenges I have faced as an avenue for opportunity.

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!

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.

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.

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, 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, 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, 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.

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.

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.

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, 20 months

Congenital hydrocephalus from a brain bleed

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

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.

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.

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.

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.

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.