Ameneh's story on


These are real stories of people facing the end of their lives. They are about love, freedom, family, home, joy, purpose and trust. They don’t take life for granted. They focus on what matters most.

I came to Australia from Iran with my husband, Morteza, as refugees. It was very hard leaving our country and our family but we had no other choice.

Soon after arriving here, I discovered I was pregnant. We called our beautiful daughter Anahita. She was always happy.

When Anahita was eight months old, I noticed that her development did not progress and that worried me.

After lots of tests, the doctor told us that she would gradually lose all her capabilities – standing, sitting, seeing, hearing – and would not live beyond four years.

It was unbelievable to think that we would lose our precious daughter. This was so hard on top of losing our family, our country. We were facing this alone in a new country.

The palliative care group came to support us. That was when I understood the true meaning of humanity. They felt for us deeply and helped us like a family. We trusted them because they treated us sincerely.

With their help we gave Anahita the best quality of life for as long as possible.

Anahita was a rainbow in our life. When she died everything ended for us. We lost the light, the colour of our life

Palliative care also saved us. We had lost hope and it was possible that we would no longer be here today.

The counselling sessions I had helped me to accept that I should not feel guilty for Anahita’s illness.

They made special necklaces for us from impressions of her fingerprints. As we walk, the necklace makes sounds that remind us of Anahita. She will be with us always.

We now have a sweet daughter named Arnika. She has brought colour back to our black and white life.

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. We help more than 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement.