My nephew, David, was diagnosed with Spinal Muscular Atrophy Type I (also known as Werdnig-Hoffmann disease) at the age of four months and passed away at nine and a half months. Most everyone who knows me knows that. Tonight I want to attempt to raise awareness by sharing about it.
SMA basically causes muscles to waste away and robs people of their ability to move and eventually, breathe. Their minds are just as strong as ever, but their bodies fail. THERE IS NO CURE. It is best defined by going to this site: http://www.mda.org/publications/fa-sma-qa.html
Tonight I want to pay tribute to another little boy who passed away yesterday of SMA. Here is a link to his caring bridge page:
http://www.caringbridge.org/visit/corneliusbrewer
Please think of and pray for this family as they grieve. Please ask that they are enveloped with a peace that passes all understanding.
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2 comments:
I receive Google Alerts for SMA (Jeffrey is our own angel) and just read your blog post. I am so sorry to hear about David and Case.
Since you would like to help spread awareness, as we all do, I thought you might like to share the link to the online petition to garner Congressional support for the SMA Treatment Acceleration Act - http://www.petitiontocuresma.com/ .
Also, there are several wonderful groups for SMA families, along with some very special memorials. If you're interested in learning about them so you can post the links, please don't hesitate to contact me!
Helen Baldwin
jeffreyb@skybest.com
Thank you for your post, and your sweet comments on my blog. I have not had a chance to get around to emailing you, but I intend to as I feel we share a special bond! I shared a wonderful week with my family as we Celebrated Case's life last Saturday. I think he and David are probably playing together in heaven! Much love,
Robyn
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