One year…..One year since we received the call that would firmly change the projected path of our lives. Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays. PURA Syndrome - the first time I would hear the name of this rare genetic condition. Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.
Read MoreI started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.
Read MoreThanksgiving is upon us!! We love this time of year. Our family views it as a time to come together and reflect on the blessings of the last year. 2018 has not been the easiest year for our family, considering we received a diagnosis for our daughter, Taylor, which explained her significant developmental delays, but despite that, we are trying to approach life with thankfulness and gratitude.
Read MoreIt is difficult to put into words the amount of gratitude that our little family has experienced over the last two months. From the moment, we received Taylor's rare genetic diagnosis of PURA Syndrome, we were treated with great care, love, and support.
Read MoreThe day we found out I was pregnant, we were thrilled. We were overjoyed with hope and promise for the future and were beyond excited to become parents. I had an uneventful, healthy, and smooth pregnancy. Taylor must have thought so too, because she was very comfortable in mama's belly.
Read MoreTaylor is a joyful and vivacious toddler who has a rare genetic condition called PURA Syndrome. Taylor teaches us lessons everyday, especially how to be tough in the face of adversity. This blog is dedicated to telling her story, raising awareness, and inspiring hope.
Read Taylor's Story. About This Blog. Facebook. Instagram. Back to Home.
Powered by Squarespace.
