Those of us who have not been through the awful experience can only wonder how we might cope.
The temptation to curl into a ball and hibernate more or less permanently must be hard to overcome.
But here in Otago we have several high-profile instances where families have pushed on through their pain to create something to help others.
We saw it when the late Lesley Elliott, mother of Sophie Elliott, brutally murdered at the hands of a former boyfriend 16 years ago this week, travelled tirelessly around the country to educate young people about abuse prevention and healthy relationships.
More recently, Bede Crestani and Elspeth McMillan, whose university student daughter Sophia Crestani was crushed to death at a party in a Dunedin flat in 2019, worked with the University of Otago to develop The Sophia Charter, designed to enhance the safety and wellbeing of the student community.
This week the Otago Daily Times covered the story of another inspirational family, that of Claire Aldrich, a baby who died four years ago this week from a little understood genetic condition.
It occurred spontaneously during pregnancy.
Although a scan when she was six weeks old showed an apparently healthy brain, by about eight months she had widespread brain atrophy and died before reaching nine months old.
Claire’s mother Sally said she could not really articulate how it felt to hold her baby as she was struggling to breathe, fighting to live, but she was dying.
She and her husband Jeff knew if they continued with medical interventions, they would just have been prolonging the inevitable.
As a result of this traumatic event, Australian-born Mrs Aldrich was motivated to pursue her goal of becoming a family doctor, moving with her family from Virginia and choosing the University of Otago’s medical school because of its reputation.
After the sale of their home in the United States, the couple wanted to donate some money to the genetics department in honour of Claire.
It suggested rather than just use the money for a one-off project, more could be achieved by using it to establish a fund in Claire’s name.
The Claire Aldrich Legacy Fund is being used to provide "Claire kits" with genetic teaching materials and equipment for secondary schools including an electrophoresis machine which uses electrical currents to separate genes.
Access to such materials is a long way from learning about punnet squares and eye colours which many will remember from their school biology classes.
Full marks to the foresight shown by all those involved with this initiative.
So far at least 10 schools have used the kit.
We hope many more will be able to take up the opportunity.
Mrs Aldrich has been candid about how little she knew about genetic study, saying she naively assumed all genetic conditions had been discovered and most were curable.
She has since realised how much is still unknown about the human genome – in the case of Claire’s gene mutation, HIVEEP2, it has only featured in the scientific literature since 2016.
Mrs Aldrich wants the project to help inspire the young minds of New Zealand.
"In our high school years, we are still finding ourselves. I want students to know that they can make a real difference in the world.
"They can make life-changing discoveries."
Her hope is that by sharing Claire’s story, it might "plant that seed that could one day grow into ground-breaking findings".
What a wonderful reward that would be for the Aldrich family’s generosity.
