Hi everybody! My name is Liam. I have a very rare disease called Spinal Muscular Atrophy or SMA. I have the most severe form of this disease, Type 1. SMA is a genetic disease that is characterised by muscle weakness and muscle atrophy. My muscles are so weak that I am unable to sit without support or hold up my head on my own. I also struggle to breathe on my own, and so a machine (called a BiPap machine) helps me to breathe. Because I can’t swallow safely, a feeding pipe takes food directly to my stomach. I can’t cough on my own, so my mom helps clear my airway and mouth with a suction machine. To monitor that I don’t get too excited, an Oxygen Saturation machine helps my mom to monitor my blood oxygen levels. Unfortunately SMA is a lifelong disease…which means that this…is my life.
Although my body lets me down, I am a very bright boy. I love watching Barney and Teletubbies. I love music and will always try to dance with my hands. I love going for walks outside in my special pram that can carry all the things I need with me.
I have so many things to say, and I love to learn new things. I recently celebrated my second birthday. My mom and dad have had so many expenses, but they keep trying to give me the best. There are a few things I need and I would really appreciate if you could lend us a hand.
I am so keen on chatting to my mom and dad, but my voice is very soft. I struggle to make the right sounds so lots of times people don’t understand me.
My OT recommended an Eye Tracker that will allow me to interact with a computer. My eyes will be my mouse! I can play games and learn using special software. My family have raised enough funds to buy the eye tracker (R30 000), but I still need the rest of the hardware that would allow me to access the computer.
These items include:
- Rolling floor mount that will position the screen so I can see it.
- An all-in-one PC that will be mounted on the floor mount so we can move the system where I go.
- Software that will teach me to use the eye tracker, and software that will give me a voice.
I will also need a hoist in the near future that will help my mom and dad move me more safely into and from the bath. I am growing and becoming very heavy!
Liam’s team has a Fundfind fundraising page where they are doing a great job of achieving their goals. You can help Liam to communicate by contributing here:Make a contribution