I am a parent

“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. 

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!

On January 22nd my water broke with my second child. The problem: He wasn’t due until March 10!

We had to make the decision to either deliver the boys to save baby ‘B’, or let him go, so that the other two could keep growing. We chose to deliver.

My identical twin girls Taelley and Pelley were born at 26 weeks 6 days. Too early!

At two and a half years old it was determined her ETV was not working any longer. She had her first shunt placed and a month later had her first revision.

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.

“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.”

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.