Hydrocephalus Stories from Our Community
Read stories of people living with hydrocephalus. These amazing individuals are living life to the fullest regardless of the challenges their condition brings. Want to share your own story of resilience?
Max, 3
“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”
Continue ReadingIn 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.
Continue ReadingMary, 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.
Continue ReadingTracy, 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.
Continue ReadingRafael, 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!
Continue ReadingAbby, 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.
Continue ReadingCayden, 11 months
Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.
Continue ReadingDeborah, 59
Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!
Continue ReadingGabrielle, 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.”
Continue ReadingAlexsis, 18
I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!
Continue ReadingVincent, 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!
Continue ReadingLuna, 18 months
Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!
Continue ReadingHiro, 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!
Continue ReadingWylie, 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.
Continue ReadingOlivia, 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.
Continue ReadingWyatt, 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.
Continue ReadingChristopher, 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.
Continue ReadingBlair, 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.
Continue ReadingPhilip, 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
Continue ReadingLyra, 3
This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.
Continue ReadingMatthew, 9
Matthew needed additional brain surgeries to move the catheter into his ventricle where, unless a cure is found, it will stay for the rest of his life.
Continue ReadingMaylee, 16 months
Maylee has an amazing, happy little personality despite all she’s been through. She is truly a tough little hydrocephalus warrior!
Continue ReadingLogan, 9
In the end, we had no answer to what caused Logan’s acquired Hydrocephalus but it didn’t matter, he can do anything he puts his mind to and Hydrocephalus will not stop him!
Continue ReadingHeather, 30
An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!
Continue Reading- « Previous
- 1
- 2
- 3
- 4
- Next »