Our Hydrocephalus Stories

Diagnosed at 23

Danielle

Story Written by Author/Self

By JennBechard January 29, 2021

Danielle spent years with debilitating symptoms that caused her to struggle in school and life. Eventually as an adult, she was treated for hydrocephalus and it changed her life.

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Diagnosed at Birth

Zoe

Story Written by Father

By JennBechard January 29, 2021

Zoe is not even a year old but has already endured 13 surgeries due to hydrocephalus. Despite her challenges, she continues to amaze everyone with her smiles and joy.

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Diagnosed at Birth

Jacob

Story Written by Author/Self

By JennBechard January 29, 2021

Jacob grew up with learning disabilities due to his hydrocephalus. However, he eventually figured out a way to turn his challenges into a gift for himself and others as a tool for memory retrieval and later behavior management, life skills and so much more.

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Diagnosed at 1 Month

Jack

Story Written by Mother

By JennBechard January 29, 2021

At almost 2 years old, Jack has already endured nine brain surgeries to treat his hydrocephalus. But his parents have no doubt that their little “fighter” will continue to amaze them and make them stronger in the process.

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Diagnosed In-utero

Isaac

Story Written by Mother

By JennBechard January 29, 2021

When Isaac developed hydrocephalus, his parents were told that he would have severe disabilities his entire life. Now, the spunky 3-year-old is defying the odds – running, laughing, dancing, speaking two languages and more!

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Diagnosed at 8 Months

Wali

Story Written by Author/Self

By JennBechard January 29, 2021

Wali was in and out of the hospital frequently as a child due to his hydrocephalus, and then again when he was older. But that didn’t stop him from pushing hard in school. Today, he’s doing what he loves to do and is the proud owner of an IT company.

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Diagnosed at 2 Months

Tyler

Story Written by Author/Self

By JennBechard January 29, 2021

I have learned that no matter what I’m going through, I can have a positive attitude and a determination to overcome any obstacle I meet.

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Diagnosed at Birth

James

Story Written by Author/Self

By JennBechard January 29, 2021

James has always been fearless. He never let his hydrocephalus stop him from climbing mountains or volunteering to build houses in Cambodia. Even after a physical set back, he’s determined to continue living life and giving back.

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Diagnosed at 33

Brenna

Story Written by Author/Self

By JennBechard January 29, 2021

Brenna’s life was turned upside down after she developed hydrocephalus six years ago. But after undergoing brain surgery for a shunt, she refused to let her condition stop her from enjoying the outdoor adventures she always loved.

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Diagnosed at 7

Danielle

Story Written by Author/Self

By JennBechard January 29, 2021

I was diagnosed with hydrocephalus at the age of 7 years old and had my first shunt on August 14, 2007. Doctors told me I was going to live with a shunt for the rest of my life but Aug. 20th 2020 is the 10th anniversary of being shunt free!

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Diagnosed at 3 Weeks

Brianna

Story Written by Author/Self

By JennBechard January 29, 2021

Brianna grew up in and out of the hospital. That’s when she found her passion of becoming a pediatric nurse. Now she’s about to achieve her childhood dream.

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Diagnosed at Birth

Eric

Story Written by Author/Self

By JennBechard January 28, 2021

My perception of hydrocephalus has changed. I no longer view it as a limitation nor a difference to be scared of, but a unique quality that brings out my greatest strengths while nurturing my weaknesses.

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Lynn

Story Written by Author/Self

By JennBechard January 28, 2021

What happens if you wake up one morning to crippling headaches and learn that you’ve had hydrocephalus your whole life? That’s what happened to Lynn.

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Diagnosed at Birth

Michael

Story Written by Author/Self

By JennBechard January 28, 2021

“I use my #hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness.”

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Diagnosed at 6

Lola

Story Written by Author/Self

By JennBechard January 28, 2021

Today I’m happy that the good days still outnumber the bad days. My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition.

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Max

Story Written by Mother

By Ines Schlegel February 12, 2020

“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”

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Diagnosed In-utero

In Memory Of Skylene

Story Written by Mother

By JennBechard September 3, 2019

“Skylene saved the lives of 5 individuals through organ donation. She was the most giving person. If she knew she gave this gift of life she would be so proud!” Read Skylene’s story, told by her mom.

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SYS - Ft image Mary Sullivan

Diagnosed at 23

Mary

Story Written by Author/Self

By Ines Schlegel June 17, 2019

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

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Diagnosed at 23

Tracy

Story Written by Author/Self

By Ines Schlegel September 27, 2018

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

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Rafael

Story Written by Author/Self

By Ines Schlegel August 23, 2018

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

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