Linked are two articles from American newspapers that highlight the story of families who have recently had children diagnosed with Cystinosis.
The first linked article covers the story of six-year-old Victor Gardner and includes a video clip of Victor. Unfortunately you will probably need broadband to be able to view the video properly:
The second linked article concerns the Partington family who have recently discovered both their children have Cystinosis. Despite this huge shock in their lives, the family have begun fundraising and raised over $200,000!!!: