Everyday during the month of February and leading up to World RARE Disease Day on February 29th, the Global Genes Project in partnership with the RARE Project will be featering stories of Hope and Inspiration. They are asking that we share these stories and I would love if you would pass them along too....
Patient Stories of Hope and Inspiration
Despite the rarity of Nager Syndrome, with the internet we were able to learn much more in the first few days of her life than what the hospital could provide from their outdated genetics books. We have been able to reach out to other families whose children have Nager Syndrome and have even met a few in person. We are blessed to have strong support from our family, but through the Nager and Miller Foundation we have also felt part of another "family" who understands the unique challenges and joys that we experience with a child like Peyton. Through our blog www.peytonsparents.blogspot.com we have had many families reach out to us who have children that are newly diagnosed. We even had a family contact us before their child was born, and seeing Peyton's smiling face brought them hope in a time of great stress.
The Global Genes/RARE Project, is just one more "family" that we can feel a part of. In December, I received a bracelet as part of the 7000 Bracelets for Hope project. Although I have never met the jewelry designer, Eileen has made me feel such hope that there are others just like her in the world who will make Peyton's path easier.