What a powerful speech by a wonderful PURA parent! We hope you will take the time to listen/watch and truly grasp the magnitude of the life-altering idiosyncrasies that come with being thrust into the great unknown as a PURA family. Our PURA little falls into the ‘newly diagnosed as an infant’ category, but oh how we could sit and ponder what it would be like to NOT know. Our own perspective has continued to change in the short 20 months we have been a part of the Parents of PURA family. There are ups and downs, good and bad days, and life is quite fluid in unexpected ways. There are amazing PURA parents out there, including the one giving this Tedx talk. We are blessed to have the support system that being a ‘member’ of the Parents of PURA family has brought us. However, Ryker could use EVERYONE’s support. Listen to the video for some great examples of how!