Brain surgery is scary stuff.  A new baby is scary stuff.  3 months in the NICU and spitting in the face of death are all scary stuff.  Together they are absolutely petrifying.

Read More

Aqueductal Stenosis

“During an emergency 18 week scan after sustaining a blow to my tummy, the technician had a very worried look on her face.. It was there my fears went from bad to worse.”

Read More

I had a very typical pregnancy with Blythe. She is my third child an not unlike her brothers. Blythe Raye was born at 40 weeks on October 24, 2016 weighing 7 pound 11 ounces.

Read More

The words that stuck in my head were “there is still time to terminate the pregnancy”, but one thing that was certain was that God gave us this little boy and we were going to do everything in our power to bring him into this world and shower him with love.

Read More

Noelle’s is almost five. Thankfully her post surgery journey has been uneventful.
We are determined to continue to raise awareness for Hydrocephalus and help those impacted as much as possible.

Read More

Aqueductal Stenosis

When Lucy woke up from surgery, she looked right at us and we couldn’t believe the immediate changes. A year later, we are revision free, she is doing wonderful and she is meeting her milestones.

Read More

The doctor explained to us that Ashley’s brain was bleeding and not draining properly. She used the word hydrocephalus, which I’m pretty sure was the first time I had ever heard that word.

Read More

People often ask us how we do it- how do we cope with all the surgeries? For us it is really very simple…you just do what you have to do.

Read More

“So there was not going to be a magic pill, my 8lb, one month old little girl was going to be having brain surgery.” Those were the words of Sofia’s mom when she first learned that her daughter had hydrocephalus and was going into surgery the very next day.

Read More

Congenital Hydrocephalus

Robby is a happy young man with an outgoing personality and a great sense of humor.

Read More

Bilateral Subdural Hematomas- cause of bleeds- unknown

Rylie is a bright and bubbly 3 year old who loves to laugh and play.

Read More

Aqueductal Stenosis

She is an incredibly smart, active two year old with a great sense of humor.

Read More

Congenital Hydrocephalus

I am so blessed to have such a diagnosis- it makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

Read More
Toddler with hydrocephalus

Congenital hydrocephalus

Layla was born with an Occipital Encephalocele which caused her hydrocephalus. She’s a happy toddler, hitting her milestones and bringing joy to her family after a successful shunt placement.

Read More
Cohen, young boy with hydrocephalus

Congenital hydrocephalus

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!

Read More
Young boy with hydrocephalus

Acquired hydrocephalus from a brain tumor

He doesn’t let any of this slow him down. He loves going to preschool, and playing with his little sister, Kate.

Read More

Acquired hydrocephalus from a brain injury from being shaken
Elementary School Student

Brianna is the greatest gift we could ever ask for. We consider ourselves the very proud parents of a survivor who wants to and will change the world.

Read More
Kid with hydrocephalus

Acquired hydrocephalus
Third Grade Student

You learn that every time you think you know what to look for, you know how to be proactive, you know how to know that an episode is coming…you find out you don’t really know. You find out that as she grows, as she gets bigger, that things change. Every day is a learning experience.

Read More
Share Your Hydrocephalus Story

Congenital hydrocephalus
Baby extraordinaire!

Elliott is now 6 months old, and he continues to amaze us everyday with is abilities and determination

Read More