Majerle and Easton Shannon are the parents of a baby diagnosed with spinal muscular atrophy. Their entire lives have changed to help their child live the fullest life she possibly can.
Mayble Shannon was diagnosed with SMA Type 1 a few months after she was born.
"In a healthy person, (the survival motor neuron gene 1) produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness," according to curesma.org.
Approximately 1 in 10,000 babies are affected by SMA and about 1 in 40 Americans carry this recessive gene. SMA affects all muscle systems. People with SMA are not able to hold up their heads, roll over, crawl, sit without support or walk. It even affects muscles including sucking, swallowing, digesting food and excretion. Soon after she was diagnosed, Mayble had a feeding tube inserted that will help prevent pneumonia and starvation if she ever does loose her ability to suck or swallow. She will also be getting a breathing machine soon.
Organizations like The Fast Movement are pushing for a number of news drugs to be released to patients. These drugs provide hope for SMA victims and their families. The sooner Mayble can have access to treatment methods the more likely her muscle atrophy will be slowed, giving her longer to live.