A Brisbane husband and father, living with Motor Neurone Disease, has recorded a song utilising the voice that continues to withstand his terminal illness.

 

John Hanley, 51, has recorded Home with a few good friends. Home tells some of John’s personal story of MND, which has confined him to a wheelchair, affected his speaking voice and made him tire quickly. However, MND is yet to take away his singing voice.

 

John wants to use this extraordinary gift to raise as much awareness and funds as possible in support of MND research by creating a series of songs. Home is the first of those.

 

Since being diagnosed with MND in June 2016, John and his family have been supported by the MND and Me Foundation, a charity started in January 2011 by Brisbane man Scott Sullivan.

 

Scott founded MND and Me after he was diagnosed to ensure Queenslanders with MND have access to practical support services while also funding MND research. Scott sadly passed away in 2014 before John had the chance to meet him.

 

“I would hate to think what my MND path would look like if it wasn’t for Scott’s courage to step up and create the MND and Me Foundation. From day one they have been there for me and my family, not only providing assistance, but also welcoming us into such a supportive community where amazing new friendships have been developed,” John said.

 

John has met so many of Scott’s friends and family and watched all his old media interviews, he feels like he knew him.

 

“From what I have seen and all the stories I have been told, I have no doubt at all that Sully and I would have been great mates. The first time we played Home it hit me hard that I was singing this song for a mate I have never met. I was singing it to thank Scott and everyone else who has ever helped anyone impacted by MND,” John said.

 

For John and his co-writers Martin Gibbons and Chris Dillon (who both also knew Scott), it’s an honour to carry on Scott’s legacy.  They are hopeful this song, and others planned, will contribute to creating an Australia where no one has to face MND alone.

 

The MND and Me Foundation has just entered its 10th year.  While there will be no celebrating until a cure for MND is found John wants this song to be used to observe this important milestone.

 

The plan for John and the band, is to keep creating songs that continue to raise MND awareness and inspire people to want to make a difference for as long as John can remain singing.  It is hoped this first song Home will encourage and attract established musicians to collaborate on future songs to increase their reach creating greater awareness.

 

The first live performance of Home will be on Saturday 28 March 2020 at the MND and Me Foundation’s 10th Annual Scott Sullivan Gala Dinner at Howard Smith Wharves.

 

Our objective is to get Home heard by as many people as possible and to raise funds to help beat this monster. 

To do this, we ask for your help.  Please share this page or the video to as many people as you can. 

HOME

Lying here with you safe to say what I’ve seen

Is enough to make a man wanna silently scream

Bitter pill to swallow when that pill is full of your dreams

 

Shotgun riding in the loneliest car

Get spun round till you don’t know where you are

Running from a monster fuelled by cold disregard

 

But some-how I made it back home to your light, you lifted the world off my chest

Here now nothing can touch what we have so just lie with me and rest

 

Did you hear that knock on the door

Let’s lie and pretend there’s nobody home

I’ve heard that knocking before

I don’t wanna go

 

As the clouds rose up and fell down on the sky

I turned to the monster, looked him straight in the eye

All I saw was a cold black steel desire – to take it all

 

But fear not now he’s gonna leave what we need

Nothin’ gonna take away this – you and me, so

Stand in my corner, watch while I fight from my knees

 

Some-how I’ll make it back home to your light, you tell me that I’m still the best

Right there nothing can touch what we have, we’ll lie together and rest

 

Did you hear that knock on the door

Let’s lie and pretend there’s nobody home

I’ve heard that knocking before

I don’t wanna go

 

Comes a time we need to get off the ground

That time when we’ll be screaming the sounds 

of a brand-new day

Hold my hand now help me up off the floor 

We’ll walk tall down to-that big old front door

There’s no other way

 

When you hear that knock on the door

Don’t be afraid you won’t be alone

You’ve heard that knocking before

I’ll take you home

 

Hmmmmmmmmmmm……… I’ll take you home

Wooooooooaaahhhhhh…….. I’ll take you home

Oh na na na na na na ……… Just take me home

Come and hold my hand …… I’ll take you home