Jeremiah last week publicly thanked his family and school for helping him during seven months of intense medical treatment, including ground breaking stem cell therapy, to rid him of 12 rare tumours in his spine.

After being given the all-clear and returning to school in February, Jeremiah took a sudden turn for the worse last Sunday and he was airlifted to Westmead Children's Hospital on Monday.

Following a four day battle, Jeremiah died surrounded by his family early on Friday, March 5.

A body scan discovered more tumours had developed deep inside his brain over the past four weeks.

His mother Nicole, father David and 10-year-old sister Ava held and sung to Jeremiah as he passed away.

Nicole said her brave little boy was strong right until the end.

"Jeremiah fought really hard all week and never complained," she said.

"He died peacefully surrounded by his family.

"We sung to him and told funny stories - telling stories has become a family tradition.

"His dad told him a secret that he said he'd never tell the children until their 18th birthday and Jeremiah thought it was very, very funny."

Nicole said the family as well as specialists were shocked by Jeremiah's deterioration.

"The doctors were shattered," she said.

"His oncologist has never seen anything like it.

"He was one of only seven kids in the world to have this type of cancer.

"The doctors told us the tumours had mutated three times and penetrated deep inside his brain.

"They don't understand it and need to do a lot more research into this cancer in children."

Nicole said she was very proud and privileged that Jeremiah was her son.

She described him as "inspiring, beautiful, amazing, eccentric, funny, a contrarian and gastronome".

The students at Milton Public School, where Jeremiah was in grade three, were shocked by his death and counsellors were brought in to help children and teachers deal with their loss.