My life with SMA

About Me

You’re probably wondering why I’m showing up on your screen today, so hi there! I’m Sally. I’m 14 years old. I don’t normally like to introduce myself with this normally, but I think it’s best I mention my disability. I have a life-limiting condition called Spinal Muscular Atrophy, which means I can’t walk, move much, or even breathe well. I don’t let it bring me down though; I’ve sung to hundreds of people, played on par with paralympians, and traveled many countries.

About SMA

SMA stands for Spinal Muscular Atrophy. It slowly takes away a person’s physical strength by affecting the motor nerve cells in the spine. SMA is caused by mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is vital to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to SMA. SMA affects around 1 in 10,000 babies, and approximately one in every 50 people is a carrier of the gene that causes SMA. There are four primary types of SMA, Type 1, 2, 3 and 4 (I have type 2!). The higher the number the less severe it is. People affected by SMA have difficulty performing the basic functions of life, like breathing and swallowing. Luckily though, SMA does not affect a person’s cognitive ability.

A common perseption of people with disabilities is that they don’t like being disabled. I can’t say I “like” it as such, but I’ve come to terms with it and it’s made me who I am today. The quirky, over-caffeinated and musical theatre obsessed who’s sharing my story with you all!