Esme is a very special, sassy and smart young lady who suffers with Spinal Muscular Atrophy (SMA).

Spinal muscular atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle).

Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells.

SMA involves the loss of nerve cells called motor neurons in the spinal cord and is classified as a motor neuron disease.

The primary symptom of chromosome 5-related (SMN-related) SMA is weakness of the voluntary muscles. and deep tendon reflexes are decreased.

We would love to give Esme and her family the best Christmas ever and will be running a series of events and really appreciate your support - Team Tugo