Hello, my name is Kerry Walsh. I was born on the 22/10/1997, I was born in a set of fraternal twins. I have SMA (spinal muscular atrophy) and I was given the life expectancy of 5 years old. I may have a rare disease but that is not what makes me different. I feel that what makes me different is my zest for life and how I live every day as if it was an adventure. I have a voice I can go on forever [you can ask my family how I literally never stop talking I even studied a degree in communications]. As much as a rare disease is extremely difficult, I also believe that without having my disease I wouldn’t be the person that I am today and I wouldn’t have had so many incredible experiences that I have been so lucky to have experienced!
Spinal muscular atrophy (SMA) is a group of inherited disorders characterized by a loss of certain nerve cells in the spinal cord called motor neurons or anterior horn cells. Motor neurons receive the nerve impulses transmitted from the brain to the spinal cord (brainstem) and, in turn, transmit the impulses to the muscle via the peripheral nerves. The loss of motor neurons leads to progressive muscle weakness and muscle wasting (atrophy) in muscles closest to the trunk of the body (proximal muscles) such as the shoulders, hips and back. These muscles are necessary for crawling, walking, sitting up and head control. The more severe types of SMA can affect muscles involved in feeding, swallowing, and breathing. SMA is divided into subtypes based on age of onset and maximum function achieved. SMA types 0, 1, 2, 3 and 4 are inherited as autosomal recessive genetic disorders and are associated with abnormalities (mutations) in the SMN1 and SMA2 genes which are located on chromosome 5.
I am extremely lucky to have a supportive and very helpful family. They are the reason I am able to do so much. I find my strength to push through every day by focusing on all the amazing things that are in my life and believing that great things are going to happen. Being a part of the Rare Diseases Association is an amazing place where people can come together with the same understanding of having a difficult life and they also aim to help as many people as I can that really need the help “Life is a beautiful gift and it’s our responsibility to live it to the full, that is what I plan on doing!”