Why a website?
We thought it was important to start bringing awareness to Rylan's syndrome. As parents, we want nothing but the best for our son and it is so difficult knowing there is no cure. As he grows, the fibrous dysplasia gets worse and pain continues. We cannot cure him. Although, we can help him give back, we can help him seek alternatives and focus on what he CAN do. We can also assist him in finding peace with what is and what shall be. You can read more about how this idea was born on his facebook page.
Why a donation?
A donation in Rylan's name to the fibrous dysplasia foundation will support the research of clinical trials to hopefully find a cure. Rylan is currently enrolled in a study at the National Institute of Health (NIH) and we visit there every few years. He goes through a series of tests so experts may study and learn from him. Funds are desperately needed for research because FD/MAS is so rare.
We thank you...
Thank you for visiting this page and listening to Rylan's music. We are only one family trying to make a difference, but together we can make magic happen.
Rylan has been given an amazing talent of playing the guitar. He also had the most fantastic guitar teacher and friend, Al Gibbs. Together they wrote Rylan's first song. Using his music, Rylan wants to encourage people with inspiration to donate to the FD Foundation on his behalf.
We've have tried our very best to turn a blind eye to the ugliness that surrounds Fibrous Dysplasia. Instead we found the goodness that has been created around it. None of this would have been possible without you. We truly consider many of you family. Without family...what would there be? Thank you from the bottom of our hearts for all the ongoing donations made to the Fibrous Dysplasia foundation in Rylan's honour. Just maybe...Rylan holds the key for the cure so desperately needed. One can only hope and pray. xo