Sharon and Brendan Voss's four-year-old son Samuel (Sammy) suffered from seizures and slow developmental growth.

Now Sammy has been diagnosed with Batten Disease (CLN2) a one-in-25-million inherited disease that primarily affects the nervous system.

CLN2 is fatal, and with constant seizuring it progressively takes away the ability of children to talk, walk and even see.

There is no cure however the Voss family have recently brought a drug called Brineura to Australia to help to slow down the deterioration process and keep their motor functions going for longer.

Sammy is the first in Queensland to start this drug, which will involve an infusion straight into the brain every fortnight.

This treatment costs $850,000 a year, per patient and is paid for by the Australian Government under the Life-Saving Drugs Program.

The Voss family is now with Sammy at the Queensland's Children's Hospital where he is getting his first treatment.

This treatment will continue fortnightly until such time a cure can be found.

A Go Fund Me page has been launched to help the Voss family through the expense of having to go to Brisbane every second week for treatment.

Sadly CLN2 is genetic, so the Voss family are now waiting to get results back on whether their one-year-old son Elijah has this disease. There is a one-in-four chance and they should know in the next four weeks.

The Voss family say they are also keenly following a drug trial in America called Gene Therapy RGX-181.

RGX-181 has yet to be approved on humans but testing has significantly improved animals' neuro-behavior and extended their survival.

Administered as a one-time treatment, this drug can potentially correct the underlying genetic condition and halt the progression of this devastating disease.

This drug has been granted Orphan Drug Designation and they could be doing human trials by the end of this year.

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