4 posts tagged with spinalmuscularatrophy.
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Project Value

"As we enter complex discussion in Canada about doctor-assisted suicide, we worry that Canadians are only getting one side of the disability story – that death is a natural choice for these poor suffering disabled people. But this story doesn’t speak to the experiences of many with disabilities. This project seeks to explore a different perspective; to share stories and experiences that contradict the narrative that disability is a fate worse than death." [more inside]
posted by clawsoon on Jul 27, 2016 - 33 comments

When I decided [to die], I felt extremely happy and sad at the same time

"But for her power wheelchair, Jerika Bolen is every bit an active 14-year-old girl – a hopeless romantic with shiny purple hair, a love of alternative music and an addiction to Facebook. She has a maturity and wisdom that belies her age, and on a recent spring day, as other 14-year-olds were finishing their final year of middle school and making summer plans, Jerika told her mother she was ready to die."
posted by AFABulous on Jul 15, 2016 - 13 comments

Avery SMAvery!

Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. [more inside]
posted by zizzle on May 1, 2012 - 133 comments

Building a life solution for your daughters

Normal for Us: The Millter Twins This is a pretty amazing documentary, made by Eric Cain for Oregon Public Broadcasting, about twins Michelle and Mariya Miller and their family. The girls were born with Spinal Muscular Atrophy and therefore have never been able to walk. The parents were determined to have their daughters live life and so developed unique motorized transports and a home that accomodates their needs. In a tiny town in Alaska. Talk about pulling the tears right out of their ducts!
posted by billsaysthis on Sep 16, 2004 - 12 comments

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