The 12-12-12 project has taken me on an educational journey. January 2012, I’m learning about a condition known as Spinal Muscular Atrophy. According to StopSMA.org: Survival Motor Neuron1 produces a protein which is necessary for the survival of certain nerve cells in the spinal cord, referred to as motor neurons. When you have a missing or defective SMN1, your motor neurons are not getting enough protein and that causes the neurons to shrink and eventually die. The inability to use muscles causes muscle weakness, and eventually the muscles will atrophy. The condition is fatal.
As I continue to learn about SMA, a single fact continues to resurface. “SMA is the number one genetic killer of children under two.” Often times I hear a statistic or statement and I become unsure how to rationalize or conceptualize. That has changed.
I recently learned about the passing of an 8 month old, baby girl, by the name of Estella. Estella was diagnosed with SMA1 at a routine 8 week check up. Estella passed away in the arms of her mother on November 13th, 2011 at 1:25pm.
After hearing about Estella’s story, the statistic became very real. Estella’s life was cut short, but her spirit lives on through her parents who are dedicated to bringing awareness and eradicating the disease that took their daughters life.
Estella’s parents want to educate, raise awareness, and prevent another family from enduring the loss and pain of loosing a child to this terrible disease. They have started a petition to the UK government requesting that every woman be offered free genetic screening for the disease.
How can you help Smash SMA?
Please sign the petition.
Learn more about Estella and her legacy: