Reposting from www.globalgenes.org/blog
With graphics unlike you’ve ever seen before, the Wall Street Journal has created a multi-chapter journey for readers to explore the world of rare disease and treatment through the Hempel family’s journey.
The piece, which includes incredible photography, video, interviews, and a complete history of the life of Addi and Cassi Hempel–shows two beautiful, young girls with a mysterious and progressive disease called Niemann-Pick Type C.
Championed by their mother, Chris, and father Hugh, the two former silicone valley entrepreneurs embarked on a massive undertaking–to advocate for, find, produce and fight for a cure for their little girls. Their determination takes them through boardrooms and courtrooms, laboratories with giant mechanical robots, and hospital stays that seem never-ending.
“A Desperate Fight to Save Kids and Change Science,” is a must-read–not just for those involved in the rare disease community, but for any parents who have had to fight for the well-being of their child through any illness.