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How a Virginia baby’s mysterious death will help New Zealand students

High school students across the country will learn about Claire Aldrich, the rare disease she had and how they can contribute to genetic research.

Claire Aldrich was a baby who smiled often. (Courtesy of Sally Aldrich)

A month before her daughter would have turned 3, Sally Aldrich wrote a note to her and shared it on a social media page she created for the child who, at 9 months old, died in her arms at a Virginia hospital.

“My beautiful girl,” Aldrich wrote. “Some days I worry that I am forgetting you. How you felt in my arms. And it hurts.”

She credited her daughter with giving her confidence to strive for her “wildest dreams” and told her the family had found “the most amazing way” to honor her. Soon, she wrote, they would be able to tell the world about it.

“So while I find myself forgetting the touch of your fingers, or the glimmer in your eyes — the passion to keep your memory alive is growing,” Aldrich wrote. “I love you. And I am going to live my life making you proud. Making your daddy, and your siblings proud. Life is too short and too precious not to follow your dreams. Sleep peacefully, sweetheart. Who am I kidding, I could never forget you.”

I first told you about Claire after she died on Jan. 7, 2020. At the time, her parents knew little about why they had lost her. Within weeks, she had gone from a seemingly healthy child who smiled often to one with RSV, a common respiratory virus with symptoms that can resemble a cold, to one with a terminal diagnosis.

Their 8-month-old daughter was admitted to the hospital for a common virus. Then they discovered her brain was ‘shrinking.’

When Claire started having seizures, Aldrich and her husband, Jeff, thought they were the result of her respiratory illness. Then doctors told them what tests revealed: Their daughter’s brain was degenerating and would continue to do so until she passed away.

“When we found out you were coming into our lives, I thought, ‘So soon?’ ” Jeff Aldrich wrote the day the family received that diagnosis. “When you arrived in our arms a month early, I thought, ‘So soon?’ When your first birthday became visible on the horizon, I thought ‘So soon?’ And then today happened. Why so soon?”

The couple decided to share their pain publicly by posting those words and others about Claire on a Facebook page they created for her. At first, the page seemed a good way to keep relatives and friends who were spread across states and countries updated on her condition. But then strangers also started clicking on it and caring about a little girl they hadn’t met. The page was initially called “Claire’s Journey.” After her death, it became “Remembering Claire.”

Claire died less than a month after her family received that diagnosis. Afterward, her parents expected doctors would, at least, be able to tell them why.

“You have her DNA. You have everything. You say it’s genetics. What is it?” Sally Aldrich recalled telling a geneticist. “She said, ‘We don’t know all the answers. There is still so much to learn out there.’ I was very naive in the sense that I thought, ‘Everything has been discovered. We live in 2020; they must know everything,’ and that is so far from the truth.”

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What is known is that Claire had a mutation involving the HIVEP2 gene. What is not known is whether that mutation contributed to her death or whether she also had another genetic mutation that hasn’t yet been discovered.

“What we know is she was born with a normal brain and, by nine months, she didn’t have much of a brain left,” Aldrich said.

Aldrich has described her daughter as a “medical mystery” and accepted that her family may forever be left with questions. But she now has a reason to hope that Claire might help other families get answers about their loved ones. Aldrich, who is from Australia, has been working with the University of Otago in New Zealand on a project that aims to honor her daughter and inspire young people to enter the field of genetics.

The university’s Genetics Otago Research Centre is planning to create “Claire’s kit,” a carry-on-size suitcase filled with material that will be used to teach high school students across the country about her life, how genetic mutations are found and how much remains unknown in that area of science.

“We hope to inspire young minds of New Zealand, and maybe beyond, to think about genetics and how it’s involved with rare diseases,” said Rebecca Oliver, who manages the Genetics Otago Research Centre. “There are definitely going to be questions for many, many years to come, and maybe some of these students we inspire with this kit are going to be the forerunners of developing the technology we need to answer more questions in this field.”

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Most of the time, students have to learn about genetics through reading textbooks or watching other people do experiments, Oliver said. Claire’s kits will allow for hands-on work. Oliver compared detecting a genetic mutation to finding a spelling mistake in a library filled with books.

“You are looking for an ‘a’ that has been turned into an ‘e’ in that book,” she said.

The Centre has other kits it lends to classrooms, but none address rare diseases or show the human side of why research in that area matters. One of the current kits calls on students to figure out through DNA what type of animal attacked a kiwi, a threatened flightless bird native to New Zealand.

Oliver said the hope is to make Claire’s kit available by early next year, and if enough funds are raised, to offer scholarships to students who are interested in genetics. The University of Otago has set up the Claire Aldrich Legacy Fund, and Sally Aldrich has created a GoFundMe page that is also raising money toward that effort.

Aldrich didn’t choose the university at random as a place to honor her daughter. She will soon be a student at the school — and Claire played a major role in making that happen. Aldrich had long wanted to study medicine and become a family doctor, but it wasn’t until Claire’s death that she decided to pursue that goal.

“It wasn’t until we lost Claire that I realized tomorrow is not guaranteed,” Aldrich, 31, said. “You really only get one chance on this Earth. I think it would be an insult to Claire if I didn’t go after my dreams.”

The couple, along with their 4-year-old named Archie and 1-year-old twins named Patrick and Philippa, plans to move from Virginia to Dunedin, where the university is located. As a way of bringing Claire with them, Aldrich said she approached the university to offer a modest donation in her name to go toward their work in genetics. The staff, she said, then came up with the idea for the kits.

“I came to them with my story and they turned it into this mission, this passion,” she said. She expressed global hopes for the kits. She said she would like to see them eventually reach classrooms in other countries, and she has no doubt that whatever genetic discoveries those students make in the future will be shared across borders.

In April, on what would have been her daughter’s third birthday, Aldrich officially announced the kits on the “Remembering Claire” page.

“Claire you may just be little, your life one that was short, but you can make a difference, sweet girl,” she wrote. “To encourage young and old minds alike to strive for a better tomorrow through research, well, what a wonderful legacy to have. Happy birthday, my love.”