“A Story Six Years in the Making” Wall Street Journal Produces Masterful Piece on the Hempel Family Saga

Reposting from www.globalgenes.org/blog

Chris_Hempel_WSJ

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.

Read the whole story by clicking the image below.
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Comments

comments

  • Lizz B.

    I just spent 3 hours reading the entire story… It definitely made me cry more than once, but wow. So powerful!