General Medicine

» bluerose903r - spinalmuscularatrophytype1

Please let everyone know about this illness. It's out there and no one knows about it. 1 in 40 people have this bad gene that causes this and they don't know. My grand-daughter just turned 1 yrs. old in August and has been hospitalized for almost 6 weeks now. She is in an experimental study at Stanford University. Hopefully they can find a cure for it or atleast find something to stop the progession of it. All these kids and babies suffering from this is horrible. Again. please let people know so that the research can continue for a cure. ThankYou bluerose903r

-- posted by bluerose903r

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» writingmama - spinalmuscularatrophytype1

In response to spinalmuscularatrophytype1 posted by bluerose903r:
Dear bluerose903

I thank you for your message - I will do some research on this for you and reply with the next 48 hours.

This must be very worrying for you, just rember all the headway science is making these days. I am sure with more research this illness will one day be curable.

Will get back to you soon.
writingmama

-- posted by writingmama

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» writingmama - spinalmuscularatrophytype1

In response to spinalmuscularatrophytype1 posted by bluerose903r:
Hi there bluerose903r - how is your grand-daughter - what a worry for you and your family, I have done some research and you are right what a terrible disease this is, to see babies suffer must be heart breaking.
Have you visted the site called www.fightsma.org/ they have all the latest research results on spinalmuscularatrophytype1.
I will be doing an article on this disease in a couple of months. However, in the meantime if you have not already; take a look at this site, it may answer some of your questions. Please keep in touch and let me know how things are going.
My prayers and thoughts are with you and your family. Take care, writingmama

-- posted by writingmama

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