Mother Calls For Spinal Muscular Atrophy Screening #smashsma
October 1, 2012
A bereaved mother from Grimsby is calling for a change in screening procedures for pregnant women to help spot a rare genetic disease.
Laura Taylor’s six-month-old daughter Grace died after being born with Spinal Muscular Atrophy.
Ms Taylor claims a simple blood test would have spotted the disease before birth, and is now hoping to raise awareness of the condition.
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Same Difference 
A pre-natal test isn’t a cure for SMA; it’s a means of screening out babies with it so they can be aborted. Not all SMA is fatal in infancy; many people with SMA live into middle age and have quite productive lives. It’s disabling but not painful or debilitating. Of all the conditions that can be screened out in this way, this is one of the least deserving.
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I realise it’s not a cure. I just wanted the people from the hashtag to see that this is happening.
If I’m not wrong disability campaigner Martyn Sibley has SMA and leads a very active life- he’s currently on a trip round Europe with an accessible car, a wheelchair and carers!
But as with every disability SMA has different types and so different levels of severity.
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