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Lachie Love story image 1

Lachie Love, left, with Nikki Fahey. Nikki is running a marathon to raise money to help fund some of Lachie's bucket list dreams.

When a child is diagnosed with diffuse intrinsic pontine glioma (DIPG) the doctor will tell the family to ‘go home and make memories’. The lethality rate for the rare form of brain cancer, most commonly found in children, is 100 per cent.

“Lachie is my little mate, he’s 9 years old,” says Nikki Fahey, Graduate Wellbeing Coach at the Graduate Research School.

Lachie Love was diagnosed with DIPG in December 2022. This year, Nikki is running the Queenstown Marathon to help raise funds for Lachie’s bucket list.

Nikki befriended Lachie’s mum, Liesje Love, many years ago in the Hawkes Bay, and Nikki’s eldest child, Finn, is two months older than Lachie.”

“The two boys have been best friends their whole life,” Nikki says.

“Lachie is this mighty, mighty dude. He’s half a metre taller than Finn, larger than life, intelligent, bright, hilarious. He is the most caring dude who will leap to help you out or make you laugh.

“He’s really fun to be around.”

Liesje, a psychologist, noticed Lachie was struggling to regulate his emotions and initially wasn’t too concerned, Nikki says. When Lachie started having an issue with his eye, however, Liesje took him to an eye specialist, and the specialist gave him an emergency referral to Starship Children’s Hospital.

“It happened really, really quickly,” Nikki says.

“There were scans, MRIs, the full shebang to get a diagnosis. They had to do a few surgeries to relieve pressure on his brain, put a shunt in and then figure out a course of treatment.”

The tumour is located “right in amongst the brain stem”, she says, and can’t be operated on because it’s wrapped around the part of the brain which controls “all of the important things for life like body temperature, heart rate and breathing”.

The cancer grows like a fungus through things, rather than being a solid tumour, making it near impossible to remove. There is no known successful course of treatment, and there haven’t been many breakthroughs because research is underfunded.

Nikki Fahey running along the beach

Nikki Fahey getting in some training for her marathon in November.

“Lachie is a bit of a medical marvel as the radiation therapy did actually shrink the tumour, it’s been stable.”

He has been on steroids as well, which is difficult as they make him even more moody, Nikki says.

“The steroids make children put on a lot of weight which affects mobility and things and can be quite uncomfortable.

“Lachie’s gone from being strong and powerful to being limited in his movement.”

Lachie can walk short distances, and crawl, but he also uses a wheelchair. His father, Andy, has left his job to provide Lachie with full-time care, and Liesje has been juggling her jobs to cover the bills.

Running to fund bucket list

Nikki sustained a head injury last year which left her concussed and it’s taken her a long time to recover. She entered the Papatowai Challenge, a 15.5km running race, because running was something she enjoyed doing before she had children.

“If I enter that, it will make me train, it will make me run, and it will be good for my mental health,” she says.

She didn’t train for it, but she still managed to run three quarters of it.

“I remember thinking, ‘if I can do this without any training, I can do a marathon’.”

She signed up for the Queenstown Marathon which takes place on 16 November, 2024. Still struggling to find the motivation to train, she says she realised her “ADHD brain” required external accountability to make training happen, so she roped in two friends and turned it into a fundraiser for Lachie.

“If I ask people for money, I have to do it … it’s not about the running, it’s about doing it for Lachie.”

She hopes the money she raises through Lachie’s Givealittle page will help cover the cost of some of the bucket list things he would like to do such as a trip to Australia, and also help relieve some of the financial pressure his family is facing.

Nikki says she has been “blown away” by the generosity of donors so far.

“I can do this thing, I am healthy, I’m capable of doing this. It might take six hours, I don’t care, because it’s for Lachie and I love him.”

-Kōrero by internal communications adviser, Koren Allpress

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