Our Hydrocephalus Stories
Diagnosed at Birth
Brianna
Story Written by Author/Self
Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.
Diagnosed In-utero
Cohen
Story Written by Mother
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!
Diagnosed at Birth
Robert
Story Written by Author/Self
Robert was diagnosed with hydrocephalus at two weeks of age.
Diagnosed at Birth
Travis
Story Written by Author/Self
Travis acquired hydrocephalus at birth from a brain bleed.
Diagnosed at 18 Months Old
Oliver
Story Written by Mother
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.
Diagnosed at age 18
Melinda
Story Written by Author/Self
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.
Diagnosed at Birth
Jessie
Story Written by Author/Self
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.
Diagnosed at Birth
Lars
Story Written by Mother
Congenital hydrocephalus from a brain bleed
Lars spent 114 days in the NICU and went through 6 surgeries while there.
Merlin
Story Written by Author/Self
Merlin was diagnosed with normal pressure hydrocephalus (NPH). She is a retired international flight attendant.
Brianna
Story Written by Mother
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.
Diagnosed in Pregnancy
Elliott
Story Written by Mother
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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