I'm new here!
Hi, my name is Love_kei33. I'm here because I have a 15 month old with polymicrogyria. Just looking for support and advice
Just a quick hello to our Polymicrogyria and our Rare Disease Communities! I wanted to introduce myself. My name is Cody Stevens and I am the PMG Awareness Organization President/CEO. I look forward to a bright future, not just with our organization, but with new friends and connections within our Rare Disease community!
Hopefully in the near future, you will hear plenty more from us regarding ways that we can all connect and relate to each other and how in so many ways, our multiple rare conditions that make up our community can work and grow together! I can't wait to connect with all of you on a much deeper level! Wishing all of you and everyone on The Mighty a safe, strong, and bright future!
PMG Awareness Organization President/CEO
He had multiple developmental delays but it wasn't until VCU Children's hospital finally came on board, that we received a clear diagnosis of what was causing his symptoms.
We were all blindsided, and as Matriarch of our Family Strong Tribe, I immediately got into my car and drove 5 hours from Philadelphia PA to Fredericksburg VA to be with my daughter. This is not our first experience with a Rare Disease Diagnosis, so the one thing we already knew to do was to rally together in support and PRAY for Miracles.
Please know we pray daily for all families with Special Needs Angels...
Please consider joining our Facebook page as well! We have almost 2000 families there waiting to support you! Visit us at
We look forward to getting to know you all!!