I am a parent

It has now been almost 4 months since Oliver had his shunt placed, and he is living life to the fullest!

After years of misdiagnoses, Lauren was finally diagnosed with hydrocephalus in 2021 and underwent successful endoscopic third ventriculostomy (ETV) surgery.

Nineteen. That’s how many days Benaiah’s family had with him before realizing how much he was up against. Benaiah’s story is hard, but it’s a good one, filled with hope and strength.

Carla’s journey began with a revelation that resonated with uncertainty. Carla was diagnosed with congenital…

“Our miracle baby is now a young woman who has been truly blessed and remains steadfast.” Read Tyerria’s story, told by her mom, Terra.

Kristen shares Cecilia’s inspiring journey, born at 29 weeks, a testament to resilience and the human spirit’s triumph.

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.

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.

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!

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

“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.

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

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

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!

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

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.

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

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

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.