Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

Pittsburgh Post-Gazette | June 20, 2011 | By Pohia Smith

Fewer than 1,000 infants and children are believed to be living in the United States with a life-threatening genetic neuromuscular disorder called SMARD, or spinal muscular atrophy with respiratory distress.

One of them is 16-month-old Silas Werner of Friendship, the son of John and Lisa Werner, who both are recessive carriers of the SMARD gene. His sister Valentia apparently died of the disease a year before his birth, although the cause was initially given as sudden infant death syndrome, or SIDS.

With SMARD, the patient has extreme respiratory distress because his diaphragm becomes paralyzed. He also has progressive severe body weakness, predominantly in the lower limbs. Silas’ disease now has progressed to most of his body, excluding his face and internal organs.

Click HERE or on the image below to read more…

About these ads

2 Responses to Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

  1. Gus La Casse says:

    Hi! Thank you very much for sharing the news about Climb for Silas. I think that is nice of you to do.
    Climb for Silas is now on Facebook. If you visit us at Facebook http://www.facebook.com/pages/Climb-For-Silas/115418365218780
    you can see pictures of our climbs.
    Sincerely, Gus SMARD Hiker

  2. Mass Friends…

    Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease « SMAHeadlines.com…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 59 other followers

%d bloggers like this: