the NeuRA blog

By Sam Liu

 

My name is Sam, and my dad Shin has motor neurone disease.

 

Let me introduce you to my dad. My dad is a role model – trustworthy, loving and friendly. You can trust that he does what he says, and says what he means. He puts the needs of others before his own. I know this because he chose to move to Australia, leaving behind all that was familiar to him in Singapore in hopes of building a better life for his family. Dad is someone who goes out of his way to make you feel at home. Give him a few minutes and his dry wit will make you smile.

 

Receiving the news of dad’s diagnosis was one of the hardest nights of my life. Dad put on a brave face when he broke the news, but it did little to soften the blow. “Progressive, incurable, terminal,” – the words broke my heart. The sense of hopelessness in that moment felt like a ton of bricks on my shoulders. From that moment forward, it felt like I was seeing everything through a lens of grey – even the things that I used to laugh and get excited about lost their colour and joy in light of dad’s diagnosis. Everyone around me just got on with life, but I knew that life for me would never be the same.

 

A lot has changed in the two years since dad’s diagnosis. My brother and I have needed to step up in ways I never imagined. Assisting dad in everyday activities that we take for granted like using the bathroom, changing and cleaning oneself has made me realise how awful and all encompassing this condition is.

 

It’s really hard to remain positive because no one knows how long dad has to live. Some days he is really down, and cries uncontrollably. Sometimes, I don’t know what to say – sometimes silence and just being with him is the only thing I can do.

 

I need my dad. I want him there on my wedding day. I want him to hold and cherish my first born, to spoil his grandchildren and enjoy retirement with mum, the love of his life.

 

MND will steal all of this.

 

MND desperately needs a cure, or even basic treatment. There is much research that needs to be done before a cure and treatment can be found. My heart sank when I heard that clinical trials are still years away. My dad doesn’t have years. But I truly believe that NeuRA’s research will in time help someone else’s dad, mum, son or daughter. So please, help NeuRA move MND research forward, and give hope to a family like ours.

 

Thank you for reading my story,

Sam.