5 years ago next week PURA Syndrome was first diagnosed. What’s followed is the formation of a little parent-fueled foundation that is a godsend to us and we have learned so much from them already and can’t wait to see where future research can go! P.S. any of y’all that have babies at home know how difficult it is to do ANYTHING other than take care of said little one. Add-on some of the harder, medically complex details of caring for a PURA kiddo and trust us when we say you can’t even imagine. These amazing human beings, many of whom we are blessed to call friends now, started a worldwide network of parents, researchers and supporters all while caring for their PURA littles. Take a moment to ponder how much sheer will and determination that takes!!!! 😵😵😵😵😵😵😵 those qualities have been passed on to PURA kiddos like Ryker 💙 his PURA Syndrome Foundation 5th birthday fundraiser is still going on! Join him next week to celebrate!! Go Ryker Go!!!!!
Ryker’s Rally Point 