Tara Castle Tuesday 21 February 2012 10:26am

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Scott with his family

What would you do if you were told you had 27 months to live?

In October 2010 Scott was diagnosed with Motor Neurone Disease (MND) – an insidious disease for which there is no known cause, and no cure.

Put very simply your body progressively stops working over a relatively short period of time.

I think most of us have wondered what ‘that’ moment in the doctor’s surgery might feel like when you’re given some truly terrible news. Here’s how Scott very eloquently describes it.

“Obviously it was an incredible shock. I honestly had no idea there was anything seriously wrong with me.

“At the time I was pretty fit, I was running three times a week and feeling really good apart from a bit of weakness in my right hand. I had the appointment with the neurologist first thing on a Friday morning and I was dressed ready to go to work straight afterwards.

We did about 30 minutes of tests, and then he sat me down and said ‘I believe you have Motor Neurone Disease. There is no cure and your life expectancy is three to five yrs’.”

BAM.

Scott’s immediate thoughts were of his wife Sarah and his two young children.

“They need me. It’s my job to provide for my family. Those first thoughts are pretty powerful in such a situation. It all happened so fast.

“I was obviously in no state to go to work. I caught a bus home and sat in a nearby park for an hour and pretty much just cried.

My wife wasn’t expecting me home and when I walked in she immediately asked what was wrong. I basically collapsed into her arms and had to tell her I was dying.”

Sixteen months on from this devastating day, Scott says he “feels good, all things considered” and largely credits this to his amazing wife Sarah and his kids keeping him positive.

He is only now entering a stage where he needs assistance with daily living, such as writing, doing buttons up, using a knife and fork etc.  Scott insists that there are a lot of people out there who are far worse off than him.

Scott reflects on his life as a blessed one, and through the overwhelming support from his wife, kids, work colleagues and friends, he is determined help others while he can.

Scott assumed there would be millions of dollars of research behind MND and that there would be a basic level of support services available for such a devastating and terminal disease, but learned the reality is quite the opposite.

There is a MND association in each state and they are doing the best they could on limited resources but there was no Foundation to support people with practical support and counselling.

So in the face of his own mortality, Scott set up the MND and Me Foundation which to date has raised almost half a million dollars to fund research and give practical support to people with MND. The Foundation’s overall goals are all about Support – Research – Awareness.

The past year has been about raising awareness; fundraising and supporting two Queensland based MND research groups.  In 2012, MND and Me Foundation will continue with those objectives, in addition to establishing support programs and introducing a financial grants program.

Scott tells me that only this morning he was lucky enough to inform a Gold Coast family that the MND and Me Foundation would cover a funding shortfall allowing them to convert their bathroom into a wheelchair friendly bathroom. This vital funding will allow them to stay in their family home.

“They were absolutely over the moon, it was an amazing feeling being able to pass on that news. Makes all the hard work very worthwhile, “ Scott said.

Ok, so what can do you to get involved and help Scott?

1. ‘Like’ the MND and Me Foundation on Facebook

2. Become a follower of MND and Me on Twitter

3. Share or retweet MND events on Facebook and Twitter

4. Sign up to receive the MND and Me newsletter

5. Complete a sports event in 2012 and fundraise for MND via everydayhero

6. Volunteer your skills at the foundation either in the office or at one of MND and Me’s events

7.Come along to the MND and Me Foundation St Patricks Day Gala Dinner on Saturday 17^th March 2012 in the Members Room at Suncorp Stadium

So given Scott has had a unique, and unexpected, opportunity to reflect on how he could have lived a different or better life – I asked him for his top 3 pieces of advice.

1. “Ensure you have adequate life insurance! Don’t be a fool like me and put it off. If you never have to use it then consider yourself a winner! Once you have a family and a mortgage then you must have it to protect your most valuable asset – your family.”

2. “Get involved in your community. Don’t underestimate the satisfaction you can get from giving back. Charity does begin at home, but your home is not just the four walls you live in, it is the community you live in.”

3. “Enjoy life. We really don’t have too much to complain about in this amazing country!  Life is unfortunately too short. Enjoy it! Trust me…”

Scott Sullivan, you are my hero.

Watch Scott’s story on The Sunday Night Program here.

Tara Castle is a fundraiser at Social Money Solutions by day and moonlights as a cash-poor energy-rich philanthropist by night.  Tara whole-heartedly believes that giving makes you happy and is on a mission to make do-gooding cool.  Sign up to her blog www.charityspam.com for your fix of all things socially kind. Tweeting from @SocialMoneySol and @tara_castle