This site is dedicated to Jordyn and her battle with Fibrodysplasia Ossificans Progressiva (FOP) as well as Epilepsy. We'll be sharing thoughts, feelings and insights as she goes through this journey.

Please check back regularly for updates on her progress.

We also hope to help raise awareness for Rare Diseases as well as Epilepsy. After all, She is not alone. Jordyn is 1 of 700 confirmed cases of FOP in the world....that is 1 in every 2,000,000,000 people! Together, we can ensure better odds for future generations.

1/4/2015 Happy New Year

      ​Jordyn's                  Journey

My Journal

We are accepting donations to help Jordyn.

More >

Happy New Year to all of my loved ones...