Our Hydrocephalus Stories

Logan, 3

“Logan is happy and we have learned a whole new kind of happiness, living with and caring for our little dude and his rare disease,” said Keli, mom to Logan who was born with L1 Syndrome, a generic form of hydrocephalus.

Elis, 28

Despite the headaches, vertigo and learning challenges caused by her hydrocephalus, Elis is studying to pursue her dream of becoming a lawyer and loves trying new adventures!

Cathy, 46

Cathy had always experienced headaches here and there but it wasn’t until a laughing fit in 2018 caused scary symptoms that sent her to the emergency room. It was then that she learned she had hydrocephalus.

Samantha, 23

Samantha lived her entire life with a shunt to treat her hydrocephalus until an emergency trip to the hospital at age 22 changed everything.

Danielle, 29

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.

Zoe, 6 months old

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

Jacob, 37

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.

Jack, 2

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.

Isaac, 3

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!

Wali, 23

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.

Tyler, 36

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. 

James, 36

I was born in Winchester hospital in England one month early due to an accident. While I was being born there were complications that resulted in the onset of hydrocephalus and the need for a shunt. When I was 10 months old the original shunt became blocked and had to be replaced. I then had […]

Brenna, 39

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.

Danielle, 21

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!

Brianna, 23

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. Read her inspiring hydrocephalus journey here and then share your own!

Marcos, 24

Growing up Marcos faced multiple surgeries and long hospital stays. But he has overcome it all with remarkable resilience. Read his incredible story to find out how the countless nights in the hospital helped him find his mission in life!

Eric, 23

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.

Lynn, 54

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. After some ups and downs, her hydrocephalus diagnosis inspired her to live life with purpose and help others however she can.

Michael, 27

“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. There are all kinds of survivors. I’m a medical survivor and a self-described ‘fighter with the soul of a peacemaker.’”

Lola, 30

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.

Max, 3

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

In Memory Of Skylene, 10

“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.

SYS - Ft image Mary Sullivan

Mary, 57

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.

Tracy, 38

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.

Rafael, 27

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!

Abby, 22

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with Hydrocephalus or any other challenges that you may face.

Cayden, 11 months

Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.

Deborah, 59

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

Gabrielle, 25

My Hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

Alexsis, 18

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

Vincent, 12

As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition!

Luna, 18 months

Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!

Hiro, 22 months

Hydrocephalus. I had never heard of the word and it sent me into a panic. The next day we named him Hiro, which means vast  in Japanese, we thought the name was very fitting!

Wylie, 6 months

Aqueductal Stenosis

Family members and friends remained very confused about her condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.

Olivia, 7

Olivia had Grade III intraventricular hemorrhages (IVH) – or brain bleeds – in both ventricles. Today she is a beautiful 7 year old who has the ability to open doors that will lead her over new horizons.

Wyatt, 18 months

Congenital Hydrocephalus.

He’s the funniest, sweetest, most caring and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.

Christopher, 46

Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.

Blair, 38

The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.

Philip, 44

I was born with an eye condition called Congenital Toxoplasmosis. During the 1970’s doctors did not know much about the Toxoplasmosis condition. However they now know this condition does more damage to the body than just the eyes

Lyra, 3

This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.

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