It Takes a Community to Raise a Child like Ours: One in a Million

This research is a retrospective auto ethnographical account detailing the life history of my son Jonathon Kyle te Rau Aroha Brewin, born 10/10/75 and died 21/7/85. This is a story full of the many concepts related to happiness, joy, love and deep, deep sadness.

The methodology enables me as his mother to reflect on the stories related to his life. His life was full of many different relationships, great great grandmother, great grandparents, great great Uncles and Aunties, grandparents, great Aunts and Uncles, Aunties and Uncles, Cousins, first, second, third and more. He also was part of the whanau wide friendships network which was extensive because both parents came from relatively large families. Because we lived at St Stephens School for his lifetime, he was an integral part of wider school life which included the staff, pupils and their whanau. However, beneath this amazing connection of people with whom he interacted, there was a looming tragedy about to unfold when he was due to go to school. Unable to be potty trained and after months of hospitalisations I was given one week to get him to the Specialist, Dr Ian Hassle. Nothing prepared me for the diagnosis.

Our son was one in a million, a rare gem. He had a rare condition called San Fillipo Syndrome.

This is our story.

Dr Marilyn McPherson’s (also known as Dr Brewin)
Iwi: Te Rarawa, Te Aupōuri and Ngāti Kahu
Dr Marilyn McPherson’s (also known as Dr Brewin) role is to conduct excellent research that is relevant to the Ngā Pae o te Māramatanga Research Plan and assist the Centre in the academic monitoring and evaluation of its research.

Marilyn completed her Bachelor of Arts with a double major in Geography at The University of Auckland in 1976. Following 16 years teaching at St Stephens School, Marilyn enrolled and graduated with a Master of Arts in Geography from The University of Auckland in 1992. Her thesis was entitled Toitu Te Whenua: Relationships Between Whānau and Whenua. Following the completion of her Masters degree, Marilyn continued to work in Māori education, research and health at Pūkenga, Faculty of Māori Education at UNITEC. In 2003, she consolidated these interests by completing her PhD at the Injury Prevention Research Centre, within the Department of Community Health and the Faculty of Medicine at The University of Auckland. Between 2004–11, Marilyn was Research – Programme Leader at Ngā Pae o te Māramatanga.