Tuesday, 21 May 2013

May 21st I Care About This (finding a cure for -SMA -Spinal Muscular Atrophy)

We all know life is amazing. We’ve heard it a million times. Whether you see it through the miracle of religion or science it is a wondrous mystery. And it is brought all the clearer to focus when you get a glimpse into other lives.  Life is so diverse and so filled with strength of character which those experiencing it often see as so little while the rest of shake our heads and cannot help but admire...

There is an illness called SMA (Spinal Muscular Atrophy). It is the number one genetic killer of young children. One in every 40 people unknowingly carries the gene responsible for SMA. Researchers estimate that in as little as 5 years a viable treatment or cure could be found if sufficient resources are provided.

I donate some of the profits from the items I weave to help fund research through the Gwendolyn Strong Foundation (GSF) because to me this is a cause worth fighting.  This is because my friends the Zahn family - Barb, Noel, and little Lucy - are battling with type 1 SMA (the most severe) daily.

Lucy’s parents are what I think of as ‘extreme’ parents. Extreme parents are parents/ guardians of special kids.  They are extreme parents because they are pushed to the edge of the parenting spectrum. They have to deal daily with circumstances most cannot comprehend. They have to make decisions for their dear ones which are scary and nearly surreal for parents on the other end of the spectrum.  I have come in contact with a number of other families with children with disabilities, from fairly light to acute and many of them are extreme parents. I am always amazed at how similar, and very different at the same time, our worries are.  I want to say a very heartfelt ‘hurrah’ and ‘I’m with you’ (as much as I can be) to those of you who daily are out there fighting the ultimate battles for your loves.  Just like you I will ‘Never Give Up’ in my hope of finding the cures needed. My support and my admiration of you and your children will never cease.

I urge everyone to find a cause dear to your own heart and fight the good fight for it. No one may ever thank you personally, but the thanks will be those that were whispered by the mind of people who were in great need; your extra strength allowed them to get through to another day.

If you'd like to see some of the scarves I'm selling to help the cause come over to LoomyBin.

1 comment:

  1. This is lovely Beth, it's such a generous thing to do, and sounds like a fabulous cause - I'm sure that family and many others are very grateful <3