My name is Kym & I have a lovely little boy called Rayne, who is 3-years-old and has Spinal Muscular Atrophy Type 2.

Obviously, Rayne can’t share his own experience, but I can share my experience being a young mum (18 years old) to a little boy with SMA.

Before Rayne was diagnosed, I was certain something was up, but I kept telling myself, you’re overreacting, you’re worrying, it’s nothing.  Nobody would listen to me because I was young and they must of thought, she has no idea what she was talking about… but! when Rayne got his diagnosis on the 23rd of October 2018, my world turned upside down. I was expecting something to be wrong but not sure of the degree and because of this, I literally just said ‘okay’ and it took a while for it to sink in what was really about to change!

Rayne can’t crawl very well, he can’t stand but with the amazing help of our puppy (who is an emotional & physical support for Rayne) and Rayne’s sheer determination, I don’t feel so shaken up by it anymore! I think to myself, there is nothing going to stop that boy and I look at his eyes and I can see so much hope. After months of going back to hospitals, doctors saying something was wrong I got listened too and now I look into Raynes eyes and he literally looks right back at me and to see that twinkle in his eye, that he lost for so long. To see that he isn’t going to let anything stop him, truly makes butterflies in my stomach, proud beyond belief doesn’t come close!

First published: 9th October 2019