Blog SMA Awareness

What makes you rare?

Rare Diseases Day 2021

This year for World Rare Disease Day on 28th February 2022, Rare Diseases South Africa is redefining what it means to be “RARE”. RDSA is calling on South Africans to #ShareYourRare be a part of #RarenessAwareness. Join the global chain of lights to shine the light on “RARE” and generate change for the 350 million people worldwide living with a rare disease, their families and carers.

My Rare

My name is Kerry Walsh and my rare is SMA.

I was born on 22/10/1997. I was born in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. We went to the doctor, where I was originally diagnosed with low muscle tone. We tried months of physical therapy with no improvement. I was sent for a muscle biopsy in my neck where they discovered that I had SMA.

Spinal Muscular Atrophy is a rare degenerative disease that affects the spinal cord and nerves. This results in muscle wasting and weakness. I was given a life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had. That plan didn’t work for us because we were not just going to give up! As a family, we take every day as it comes and always hope for the best. 

I love to use my rare to create awareness. I want to be a part of the change that I want to see in the world. Rare is beautiful, powerful and amazing. Every rare warrior deserves the opportunity to be successful in the world. I personally believe that it starts with education!

Get involved

You Might Also Like