The world seems so big at times and at others so small. How could the death of a beautiful baby girl in the USA possibly have an impact on the young people of Aotearoa, half a world away? But it can. Thanks to a generous donation to Genetics Otago by the Aldrich Family who tragically lost their daughter, Claire, to an unknown rare genetic disease at only 8-months old, we have established ‘The Claire Aldrich Legacy’.
Photo provided by Sally Aldrich
“Claire Elizabeth Aldrich was born into this world on April 14th, 2019 – in Charlotte, North Carolina. She was just perfect” says her mother, Sally. Sadly, at 7-months old Claire suffered a seizure that saw her referred to a paediatric neurologist for assessment. Claire never made it to this appointment because she was later admitted to the hospital with a respiratory illness which led to more seizures. An MRI scan showed significant deterioration of her brain and Claire tragically passed away on January 7th, 2020.
Photo supplied by Sally Aldrich
Genetic tests revealed that Claire had a mutation in HIVEP2 which explained some symptoms she had experienced prior to the seizures but it was determined that this was not the cause of her death. The geneticist working with the family speculated that there was a second rare mutation that led to Claire’s death but he could not provide an answer for the family. “As a parent, that lack of closure is so hard to live with,” Sally says, “It is a little bit embarrassing to admit, however before Claire, I naively thought that when it came to genetics, most, if not everything, was ‘discovered’. And now I know how wrong I am. There is so much to learn. So much to find.”
Sally and her husband Jeff along with their three children are moving to Dunedin later this year and they wanted to bring Claire with them in some way. So, they have made a donation to Genetics Otago to start ‘The Claire Aldrich Legacy’ a fund that will be used to grow our outreach efforts, helping to educate the next generations of budding scientists about the importance of genetic research. The fund will have a particular focus on rare disease genetics and the impact these diseases have on people’s lives.
“My wish for the Claire Aldrich Legacy is to help inspire the young minds of New Zealand. The leaders of tomorrow. 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. If I can share Claire’s story, maybe, just maybe, it might plant that seed that could one day grow into ground-breaking findings.” – Sally Aldrich, Claire’s Mother.
You can read more about Claire’s story and about The Claire Aldrich Legacy in the Washington Post.
Donations to the fund are being accepted through the University of Otago Donations page here.
