Marissa is an adorable toddler with a rare and terrible medical problem:
West Syndrome, a.k.a. infantile spasms. Her father Mike has been active in the online Special Needs community, chronicling her story for years now at his blog
Marissa's Bunny. Last year, his readers raised almost $30,000 through a ChipIn fundraiser to offset the costs of Marissa's neurosurgery. As a sort of 'thank you', and with the help of matching funds from his employers, Mike
offered to give away and/or raffle 40 iPads to the special needs kids of his blogger friends, to be used as assistive technology devices for many of their non-verbal kids. This follows on the heels of several other
iPad raffles he's held in the past year.
Guess what happened next. The Special Needs Parenting blog community is on the case:
Ellen Seidman (and her commenters),
Rob Rummel-Hudson,
Sarah and Joyce Hely,
Shannon Des Roches Rosa and others are putting together the pieces right now.
(previously on MetaFilter: the unravelings of Kaycee Nicole, JT LeRoy, Kodee Kennings, Alexa DiCarlo, and Amina Arraf)
posted by Asparagirl
on Jul 18, 2011 -
183 comments
TLE, possibly one of the most common diseases, believed to affect 600,000 to a million Americans, remains obscure. It is what afflicted Julius Ceasar, Alexander the Great, and
Dostoyevsky. Known through the work of
Bear and
Geshwind, it is virtually impossible to diagnose except in a severe cases where a seizure can be witnessed by an MRI or EEG, also because of the controversial
theories on personality. While a neurological disorder, it is treated by psychiatrists, and when medicated,
artists have often felt that the muse has left them.
posted by scazza
on Jan 20, 2005 -
38 comments
