There are many personal stories submitted that outline the devastation of having a disease that is not well understood by our health bodies.
These are the forgotten people of Australia.
The neglected ones.
Disease, disability and despair is their lot in life.
Families can only watch as their loved ones slowly loose every part of what it means to be alive.
They feel helpless and at the same time angry at the injustice of not being granted medical treatment.
There is a great sorrow among Australian families that have had to bury their adult children or their partners. They are left struggling to make sense of such loss.
Where is the help? Who makes the decision that leads to such ends as these?
Is this the only way our country approaches this emerging disease? To not notice as our families and lives are torn apart?
It has been a long road to walk down and when we could no longer stand our loved ones walked for us.
To make a submission or to read our stories please follow this link to the Parliament of Australia