Baby Edison's short life shines light on rare disorder

Nancy and Charlie McLean's son Edison was born with a rare metabolic condition Image copyright James Day
Image caption Nancy and Charlie McLean's son Edison was born with a rare metabolic condition

An Australian photographer was called on to document a young couple's few precious moments with their dying newborn son, just weeks after he took pictures at their wedding.

When Nancy and Charlie McLean were married on 24 January, photographer James Day was recruited to document the couple's happy day.

"They were super pregnant at the wedding. Little baby Edison was a massive part of their wedding day," Mr Day says.

"Charlie would put his hands on Nancy's belly, and it was like they would forget all about the wedding ceremony."

Just eight weeks later, on 23 March, Mr Day received a call from Nancy's mother, Maxine.

"She said, 'we want to know if you're busy today. It looks like we're going to have to say goodbye to baby Edison'."

Image copyright James Day
Image caption Baby Edison was treated at the Royal Hospital for Women in the Sydney suburb of Randwick

Within 15 minutes, Mr Day set out from his home in Wollongong on a two-hour drive to Sydney's Royal Hospital for Women.

Edison was born with non-ketotic hyperglycinaemia (NKH), a rare disorder that affects about one in every 60,000 births.

Babies with NKH are unable to break down glycine, an amino acid essential for growth and development, and the condition's mortality rate is high.

"We only had seven days with our baby boy, but we take immense comfort out of the truth that in those seven days he knew only love," the McLeans wrote in a short post.

Image copyright James Day
Image caption Baby Edison lived for two days after his ventilator was switched off, giving his parents time to spend time with him at home

The couple have decided to release a selection of the photos Mr Day took to raise awareness of NKH.

They are also running a fundraising campaign and will donate the money to the Royal Hospital for Women's midwifery group practice.

"At 7:30pm on Day 5, the ventilator, which had been breathing for him, was turned off and we said goodbye," they wrote.

"But our little fighter had other ideas. He resumed breathing for himself and gave us two more beautiful days.

"We were blessed enough to take him for a picnic at the beach and even bring him back home again for 24 hours of cuddle time in our own bed."

Mr Day said he originally thought he would take portrait-style shots of the family, but instead opted to capture the intimate details of their short time together.

"I had to slot in quietly, slowly, and sensitively, and basically just be there ready to capture little details that will help them remember Edison," he said.

Image copyright James Day
Image caption James Day said the experience of photographing Edison's short life had affected him professionally and personally.

He called friends who volunteer for Heartfelt, a photography organisation that photographs stillbirths and children with terminal illness, to ask for advice.

"I'd never photographed anything like this, so I got as much information as I could so I could take the kinds of photos they may like.

"There was a lot of sitting around waiting. There were the moments where everything would hit everyone at once, and everyone was sobbing, including me."

Mr Day donated his time, as did his video editor friend Maxim Drygin, who worked overnight to deliver the McLeans an edited video.

"I've been calling my family about five times as much as I usually would, treasuring the moments I have with my wife," Mr Day said.

"[The McLeans] are struggling but they're receiving some comfort from the fact that people all around the world are being reminded to love the people in their lives."

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