My 2 year old son could die at any moment. That's the reality we live 24 hours, 7 days a week with his disabilities and fragile airway – but now the government has suddenly cancelled the one day in trained nursing support for our family.

My son lives with a tracheostomy. It means his airway is compromised, and could be obstructed at any moment. We have to monitor him around the clock. It's already highly stressful and exhausting, and the one day of respite care allowed us to get by.

My husband has to work long hours so we can make ends meet while I care for Zackary and our four other children. This one day of trained help meant we could run errands. It's also the only time we could take him to the doctor. I can't drive alone with him because someone has to be making sure he's breathing – without this help, he could die in the backseat of the car as I drive him to the doctor.

It's devastating to lose this help. We feel trapped, isolated, extremely sleep deprived, stressed. We have no choice, no voice, or support. And now the government seem to be walking away from helping us. Even more terrifying – living rurally, our hospital isn't trained to deal with emergencies for people with a tracheostomy like our son. 

We've found out many rural hospitals aren't. It's a scary weight to carry around, knowing that it's up to me to know what to do and keep my son alive. It's a weight parents of children with tracheostomies shouldn't have to bear just because they live in a rural area. That's not right. We can't easily just move. We own our home, we'd need to uproot our other children, we have family here, we have hopes and dreams and aspirations for our future in this town. We just want to safely be able to include our son in that future.

I really need your help to change this decision to cut help to our family. All our doctors agree we need it, we've submitted all the forms and been patient, but I think they're just looking to save a few dollars by cutting support like this. 

This is my son's life at stake. It's also the lives of many other children with tracheostomy who are being ignored and neglected. Right now it seems likeonly a matter of time before the unthinkable happens, and someone like my son dies because of the lack of training and help the government is giving to rural tracheostomy patients.

I beg you to consider our situation and help by signing my petition asking Premier Weatherill to step in and restore the nursing help for our son, and urgently fix the lack of training for rural hospitals in keeping tracheostomy patients alive.

Kind Regards,

The Walton Family

Zackary Walton, Treacher Collins Syndrome. Tracheostomy, G-Tube, BAHA, dependent 2 year old little boy