Sunday, May 11, 2014

Dravet syndrome


My niece Alexis (on right) has Dravet Syndrome, a rare form of epilepsy. She began having seizures when she was a few months old. Since then, she's had countless catastrophic seizures and been at death's door many times.

If you would like to learn more about Dravet syndrome, you can read below a story I wrote in 2009 for the Daily Hampshire Gazette Sunday magazine, Hampshire Life, about a little girl with the condition in Northampton.

You can read stories about my brother Mike's and sister-in-law Clare's efforts to legalize, in Idaho, the use of medical marijuana that has shown promise in preventing seizures at Boise Weekly, KBOI Idaho and Idaho Statesman. There's also a very informative NPR interview in which Terry Gross interviews Dr. Frances Jensen, who touches upon this subject and many others and a great AP story.


Life in the dark: A Northampton couple's desperate attempt to save their daughter

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