Wednesday, December 8, 2010

A very special owl

Recently my sister-in-law noticed that I had posted a photo of some owl fabric I had picked up at a craft fair.  It reminded her of her friend's daughter, Getty.  Getty is a special little girl who was born in March to parents Kate Mathany and Mark Storm from Sacramento.  They lovingly refer to her as their little "owl".  When Getty was about 4 months old she was diagnosed with Spinal Muscular Atrophy (SMA).  I don't know about you, but I had never heard of SMA.  Here is some background information from Getty's blog

Spinal muscular atrophy is an inherited disease that causes progressive muscle degeneration and weakness. Infants like Getty with SMA Type 1 are born with very little muscle tone, weak muscles, and develop feeding and breathing problems over time. Weakness gets worse over time and will eventually become severe. There is no cure or treatment for the progressive weakness. The lifespan with SMA1 is seldom longer than 2 – 3 years.
  • SMA is the #1 genetic killer of young children.
  • SMA is estimated to occur in nearly 1 out of every 6,000 births.
  • Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
  • The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
Throughout all of the hardships that go along with SMA, Getty and her parents remain optimistic and enjoy every moment they get to share with eachother.

There are options available if you'd like to contribute to help Getty's fight against SMA.  Check out the Little Owl Shop or visit the website for upcoming events
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1 comment:

  1. Thank you so very much for posting on SMA. It is so important that our community understands that SMA does not discriminate. My pregnancy with Getty was an amazing experience, never once did we believe anything was wrong. You are doing such a service to everyone to get the word out. Thank you so very much.


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