For her dad, wee Juniper HItchcock was the strong little girl who gave the nurses a hard time and earned the nickname "Our Little Sass".

For her mum, she was the baby who would "throw a party in my belly" when loud music played and who, when born, was tough, fighting to do things her way, and also sweet, letting her parents have quiet moments with her.

And for her grandma, little Juniper, who died from a genetic disorder days after birth, was the wee girl who taught her to "enjoy those rainbows". She said she would keep running an ASB Auckland Marathon event each year to remember her "until St John have to carry me away".

Juniper lived just five days, but her family are making sure her impact will last a lifetime.

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Juniper HItchcock died aged 5 days after she was born with a rare genetic disorder. Photo / Supplied
Juniper HItchcock died aged 5 days after she was born with a rare genetic disorder. Photo / Supplied

Mum Toni George, dad Simon Hitchcock and grandma Jayne Lewis will run the 12km traverse event at Auckland's Marathon on October 20, in Juniper's memory and to raise money for the Starship Foundation, which funds children's health initiatives and treatments, and supports their families.

It's the third year the Stanley Bay trio have completed the event as part of Team Starship, competing under the name Jogging for Juniper.

The experience was definitely outside their comfort zone, George said. But they did it for their baby girl, and for other families who found themselves at Starship children's hospital, facing challenging circumstances, the 28-year-old said.

"We are definitely not runners. We don't attempt to break any time records. It's just the act of doing it. We wanted to surround her memory with positivity, so when people heard her name it was a positive thing, not a sad thing.

"Doing this has really helped our family as we navigate life without her."

From left, Simon Hitchcock and his partner Toni George, with their daughter Estelle Hitchcock, and George's mum Jayne Lewis, after taking part in their first Auckland Marathon event. Photo / Supplied
From left, Simon Hitchcock and his partner Toni George, with their daughter Estelle Hitchcock, and George's mum Jayne Lewis, after taking part in their first Auckland Marathon event. Photo / Supplied

In their first two years, including their first traverse six months after Juniper's death in March 2017, they raised a total of $14,000.

This year, they were aiming for $5800 - and $6500 has already been pledged.

"She was only with us five days but she managed to inspire us, and so many other people, who have got on board and helped us."

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They had been told Juniper would need medical help following her birth, after the baby was diagnosed with a congenital diaphragmatic hernia — where organs are pushed up into the chest area — at 19 weeks gestation, and then later in the pregnancy with a hole in her heart.

But when Juniper was born it was also discovered she had the rare Donnai-Barrow syndrome, which would affect her development. George thought there were only 20-30 other cases worldwide. She also had four holes in her heart, not just one.

Starship medical staff did their best but Juniper's heart wasn't strong enough for surgery to help her lungs, and her lungs weren't strong enough for heart surgery, George said.

"It was just too much."

Jayne Lewis, left, with daughter Toni George and George's partner Simon Hitchcock, and the couple's daughter Estelle. The family say running the Auckland Marathon helped their grief. Photo / Supplied
Jayne Lewis, left, with daughter Toni George and George's partner Simon Hitchcock, and the couple's daughter Estelle. The family say running the Auckland Marathon helped their grief. Photo / Supplied

As well as remembering their little girl, and keeping her part of the family, the fundraising run was a way to thank the Starship staff who supported the family during the hardest days of their lives, Hitchcock said.

"I was a bit oblivious to how much they did until I went through this ... little things like keepsakes on her bassinet, photos which they laminated, and while everything is going on you have total access and they're always encouraging you to interact with [your child]."

The 27-year-old also wanted to encourage people not to shy away from talking about children who had died.

"We love it if her name is mentioned. It means people are thinking about her. It's not like you can remind anyone that they've lost a child by mentioning their name. The worst part would be if she was just to be forgotten."

Lewis said her granddaughter had taught the family "so much" in her short life.

"She was a gift for five days in our lives. She taught us so much about life, to enjoy life, to enjoy those rainbows."

Baby Juniper HItchcock's time was short, but her legacy lifelong. Photo / Supplied
Baby Juniper HItchcock's time was short, but her legacy lifelong. Photo / Supplied

And to enjoy running 12km "at 51, with a gammy toe" — at least until Juniper's big sister Estelle is old enough to join the family's annual tradition.

All three family members hoped the 4-year-old would eventually join their Jogging for Juniper team, and Lewis joked she was already eyeing up the 2.2km Kids Marathon, on which children between 5 and 9 can be accompanied by an adult.

"Maybe grandma could do that one with her."

Donations to Jogging for Juniper can be made at https://bit.ly/2nMxg3U
Registrations for Team Starship are also still open. People can join by calling 0800 782 774 or 0800 STARSHIP, or emailing starshipfoundation@adhb.govt.nz