Baby Claire Aldrich died of a little understood genetic condition, but an educational fund in her memory is helping to keep her memory alive.
A scan of the happy and seemingly healthy baby at 6 weeks showed no issues, but a scan about 8 months showed widespread brain atrophy.
Claire did not make it to 9 months — Sunday marked four years since her death in January 2020.
Mother Sally Aldrich said the Claire Aldrich Legacy Fund was developed with the "amazing" University of Otago genetics department in honour of her daughter.
It aimed to inspire high school pupils about the difference they could make with study in the field where many mysteries remained.
Until faced with Claire’s terminal prognosis, Mrs Aldrich said she naively assumed all genetic conditions had been discovered and most were curable.
Doctors informed her Claire had the HIVEP2 gene mutation, only recognised since 2016.
It was not inherited but had occurred spontaneously during pregnancy.
"I was told that there's so much that we do not know about the human genome, and that we do not know why these things happen and we do not know how to treat them", she said.
Her own high school brush with genetics had been all about punnet squares and eye colours.
"I definitely didn't learn that I could possibly find a genetic mutation, and that's what we wanted to convey to these students, to the the leaders of tomorrow ...
"They can discover these new mutations that will not only help people in New Zealand but will help people all over the world get answers, because these discoveries of mutations and conditions lead to treatment."
It had reached at least 10 schools already, and the feedback was positive.
Claire’s death had also motivated Mrs Aldrich to pursue further study; she had always wanted to work in healthcare.
"Claire didn't get the chance to make dreams or aspirations.
"I had academic ambitions I had not fulfilled, and who was I living with an able body and able mind to not go for those when she didn't even get the chance?"
She had been living in the United States with her husband and children — Claire had an older brother, and a twin boy and girl were also born in 2020.
The family moved to Dunedin due to the reputation of its medical school.
She successfully completed the health sciences first year course, and was looking forward to pursuing medicine or dentistry in future, she said.
While mourning her daughter, she felt thankful and happy when she looked at her life now.
Claire had given her a different perspective. She now knew how precious life was, although sometimes it was not fair and did not make sense.
She had been a beautiful, smiley baby.
"I'm thankful that she chose me as her mother and I did get that time with her, even if that time was just not enough", Mrs Aldrich said.
