Well, December 12th has arrived and Landon's story about his diagnosis with Cystinosis is not yet in the Post Gazette. I will update when I have more information.
There are two links that I wanted to share:
This first video is on Dr. Stephanie Cherqui who is a researcher who is working hard to find a cure. It's a great video and this is an amazing woman! The whole Cysinosis community is so thankful for her passion, dedication and determination. It provides so much hope. My dream is to be able to talk about a disease that Landon used to have, but was cured!
http://www.youtube.com/watch?v=V_Tsdf8WzyY&feature=relmfu
This next video is about Hank, a beautiful little boy, who also has Cystinosis. It gives you an idea of what the day to day is like for a child with Cystinosis. Our family can really relate to Hank's story. There is so much hope which is why we feel so strongly about raising money to support the research.
http://www.youtube.com/watch?v=pTvAIw1m-qI
No comments:
Post a Comment