The Big Weekend Away

What an incredible weekend! Jimmy and Landon managed well without me and I survived my first nights away from my baby boy. I flew to Atlanta on Friday to participate in a Patient Feedback Session held by a marketing group who works closely with the pharmaceutical group, Raptor, that created the 12 hour drug that will, hopefully be approved, to treat Cystinosis. There was a very small group of caregivers and preteens/teens/adults with Cystinosis. It was my first opportunity to meet anyone with Cystinosis in person. I don't know why I was asked to join the group but I will tell you, I feel so blessed to have had the opportunity. I will also say that it makes it even more important to me, for our family, to attend a conference in the near future. I had the opportunity to share Landon's story, our story with people who totally get it. I cannot tell you how it feels to share something about Landon and his behaviors and witness that all knowing look of another parents face, whether they are parenting am almost 2 year old or a 16 year old. I am even more excited about the possibility of this 12 hour drug, RP103, being approved by the FDA. I am even more optimistic about my baby's future. I feel even more empowered as a parent with a child with special needs. Because of the Cystinosis community, I am able to work as a partnership with Landon's amazing doctors rather than being totally dependent on them for information. It's a great feeling. I was also reminded that there are incredibly kind and compassionate people in very important positions who are committed to improving the quality of life of people in this community. How awesome is that? The people who work for the marketing and pharmaceutical group have been to the Cystinosis conferences. They sat with us and talked about our kids, told us about their lives and families, about their passions and asked us about ours. I cried once (good tears) and laughed a whole lot. So, I am better informed, full of hope and had a blast!