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