Our Hydrocephalus Stories

Young adult living with hydrocephalus

Diagnosed at Birth

Brianna

Story Written by Author/Self

By Amanda Garzon February 15, 2016

Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

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Cohen, young boy with hydrocephalus

Diagnosed In-utero

Cohen

Story Written by Mother

By Amanda Garzon February 15, 2016

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!

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Robert, congenital hydrocephalus

Diagnosed at Birth

Robert

Story Written by Author/Self

By Amanda Garzon October 26, 2015

Robert was diagnosed with hydrocephalus at two weeks of age.

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Travis , adult with hydrocephalus

Diagnosed at Birth

Travis

Story Written by Author/Self

By Amanda Garzon October 26, 2015

Travis acquired hydrocephalus at birth from a brain bleed.

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Young boy with hydrocephalus

Diagnosed at 18 Months Old

Oliver

Story Written by Mother

By Amanda Garzon September 23, 2015

Oliver acquired hydrocephalus from a brain tumor when he was 18 months old. He doesn’t let any of this slow him down. He loves going to preschool and playing with his little sister, Kate.

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Young adult living with hydrocephalus

Diagnosed at age 18

Melinda

Story Written by Author/Self

By Amanda Garzon September 23, 2015

Melinda was diagnosed with congenital hydrocephalus at the age of 18. In the summer of 2013, her symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

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Young adult living with hydrocephalus

Diagnosed at Birth

Jessie

Story Written by Author/Self

By Amanda Garzon September 23, 2015

Jessie acquired hydrocephalus from a brain bleed and she has decided to share her story in the hopes that by talking, we can end the negative stigma around differently-abled people.

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Lars, toddler with hydrocephalus

Diagnosed at Birth

Lars

Story Written by Mother

By Amanda Garzon September 23, 2015

Congenital hydrocephalus from a brain bleed

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

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Share Your Hydrocephalus Story

Merlin

Story Written by Author/Self

By Amanda Garzon September 22, 2015

Merlin was diagnosed with normal pressure hydrocephalus (NPH). She is a retired international flight attendant.

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Brianna

Story Written by Mother

By haintern1 September 14, 2015

Brianna acquired hydrocephalus from a brain injury from being shaken as a child. She is the greatest gift her family could ever ask for. They consider themselves the very proud parents of a survivor who wants to and will change the world.

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Congenital hydrocephalus

Diagnosed at 18 Months

Danielle

Story Written by Author/Self

By haintern1 September 1, 2015

Danielle was diagnosed with hydrocephalus at 18 months old.

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Congenital hydrocephalus

Diagnosed at Birth

Diane

Story Written by Author/Self

By haintern1 September 1, 2015

Diane was born with hydrocephalus. She is now a 5th grade teacher.

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Acquired hydrocephalus

Diagnosed at Birth

Matthew

Story Written by Author/Self

By haintern1 September 1, 2015

Matthew acquired hydrocephalus from a brain bleed. Currently, he is a security officer and he is married with 5 kids. He is working and accomplishing things that doctors thought would not be possible.

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Kid with hydrocephalus

Diagnosed at 9 Months

Emma

Story Written by Mother

By haintern1 September 1, 2015

Emma was diagnosed with hydrocephalus at 9 months old and has undergone six shunt revisions since her shunt placement.

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Congenital hydrocephalus

Diagnosed at 6 Weeks

Greg

Story Written by Author/Self

By haintern1 September 1, 2015

Greg has congenital hydrocephalus and is a manager at a bank. Hydrocephalus is part of who he is and it changes the way he does certain things, but he does not let the condition define who he is as a person.

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Teenager with hydrocephalus

Diagnosed at Birth

Carly

Story Written by Author/Self

By haintern1 September 1, 2015

Carly acquired hydrocephalus from a brain bleed. She says that shunts quit; she doesn’t!

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Share Your Hydrocephalus Story

Diagnosed in Pregnancy

Elliott

Story Written by Mother

By Amanda Garzon August 31, 2015

Elliot acquired hydrocephalus from aqueductal stenosis. His hydrocephalus was treated with an ETV/CPC. He continues to amaze his family every day with his abilities and determination.

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