"My name is Leanne, and this is my daughter, Dominique..."

My family is my world. All I want is to continue being a mother to Dom and a wife to my husband, John.  Yet I've been told that living in a nursing home is the only option if my health deteriorates.

If that happens, who will care for Dom?  Who will be there to support my husband as he raises our daughter alone?  How will my daughter cope?

Having MD is one thing.  Breaking up my family because governments simply have not committed the resources I need to to live my life is an outrage.

Leanne is 34 years old and has Muscular Dystrophy.  The light of her life is her daughter Dominique.  Though she doesn’t know it yet, 7-year-old Dominique also has Muscular Dystrophy.

Leanne receives a minimal number of support hours that are now insufficient to deliver the support she needs.  When she applied for more hours, Leanne was told that she and her husband, John, should look for a nursing home for Leanne to move into.

If they had chosen this option, it would have meant the end of their family, an option that Leanne and John refuse to countenance.  As a result, John provides increasing amounts of support for his wife, as well as holding down a full time job. 

If she does not receive the increased support she needs, Leanne and John face a stark choice. 

Either John gives up his job and the income the family needs to survive to care for his wife; or Leanne moves into a nursing home. 

If John relinquishes his job, the family will not be able to maintain their mortgage; they will lose their home and face the prospect of trying to survive on a very limited pension.  If Leanne moves into an aged care facility, they lose their family.

10 months ago, Leanne was promised some of the additional hours she needs to remain at home.  None have materialised. 

As a valued employee of Transfield, John's employer has indicated that they do not want to lose him and have thrown their support behind John and Leanne’s efforts to get the additional support hours Leanne needs.

In the longer term, what is perhaps most unbearable for Leanne is that the future she faces in a nursing home will be the future her daughter will face too unless something is done. 

Leanne’s story is representative of all young disabled Australians with complex support needs who merely want a ‘fair go’ and the chance to have a life worth living. 

Leanne and her family live in North Queensland.