- A giant birthmark at birth later led to the devastating discovery that baby Livi had neurocutaneous melanocytosis
- Before her first birthday, she endured multiple brain surgeries and began chemotherapy
- Despite the challenges, Livi remains a happy, resilient little girl
Here, Livi’s mum Harmonie Sheahan, 42, from Auckland, NZ shares her story in her own words:
‘It’s a girl,’ I cried to my partner Jason, then 36.
‘That’s wonderful!’ he exclaimed, hugging me tight.
Our prenatal blood test results had just come in, and we’d both longed for a daughter.
When we’d discovered we were having a baby within our first year together, we were thrilled. We’d both always dreamed of being parents.
Being 40, I had every possible scan and test and they all came back normal.
But the moment Olivia – who we called Livi – arrived, following a traumatic birth, in May 2025, we knew something was different with her.
She had a huge dark birthmark covering most of her tiny body. It stretched from her chest and back right down to above her knees, with smaller marks scattered across her face and body.
‘What is that?’
‘What is that?’ I gasped.
Nobody answered. Instead, my bub was whisked away for photos of her skin to be taken and studied.
Jason and I were in shock. Far from soaking up those precious first newborn cuddles, we found ourselves thrown into a world of fear.
Not long after, a dermatologist came to see us with news.
‘I’m sorry, your daughter has a giant congenital melanocytic naevus, or CMN,’ she said.
‘What is that?’ I asked, horrified.
‘It’s a rare condition where pigment cells grow abnormally on the skin before birth,’ she replied.
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‘Many sufferers only have the condition externally, but there’s a chance it can spread internally to the brain and also to the spine.’
We were beside ourselves with worry until Livi was able to have an MRI when she was a month old.
‘The scan is clear,’ the doctor assured us afterwards.
Jason and I cried with relief that the birthmark was just cosmetic.
But at three months old, Livi began screaming constantly and projectile vomiting.
We rushed her to hospital where doctors discovered she had hydrocephalus – dangerous fluid build-up on her brain.
Livi was rushed into emergency brain surgery to have a shunt inserted to drain the fluid.
‘We can’t lose her,’ I sobbed in Jason’s arms.
‘Then came the news that shattered our world.’
Livi survived the surgery – but then came the news that shattered our world.
Further testing and a contrast MRI revealed that she did indeed have the disease internally.
‘I’m sorry, but Livi has neurocutaneous melanocytosis, or NCM,’ the specialist told us.
‘It’s an extremely rare neurological disease where a birthmark’s pigment cells spread into the brain and spinal cord.’
We were horrified to learn the condition can be life-threatening. Many children didn’t live beyond the age of four.
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Further genetic testing revealed Livi carried the NRAS mutation, known as the growth gene.
That meant the disease would behave similarly to cancer, continuing to grow through the brain and spine – and there was currently no cure.
We were shocked that Livi had been born with the birthmark on her brain, which could turn out to be deadly. Somehow it was missed in the original MRI.
At five and a half months old, her first brain shunt failed so it was replaced.
Then at seven and a half months, fluid built up in another part of her brain, requiring yet further surgery and another shunt.
Watching our baby endure surgery after surgery was heartbreaking.
‘At nine months old, Livi began her ongoing chemo.’
At nine months old, Livi began her ongoing chemotherapy, in the hope of slowing the progression of NCM in her brain. The treatment involved daily oral medication along with injections given over seven days every 20 days.
It was brutal on her tiny body. She vomited, cried constantly and just wanted to be held.
‘I just want to stay home with her,’ I wept to Jason.
But with both of us needing to work full-time, we had no choice but to send her to daycare, even though being immune-compromised placed her at greater risk of illness.
Thankfully, the carers adored her.
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‘She’s always smiling and laughing,’ they told me. And it was true.
Despite everything she’s endured, Livi is the happiest little girl in the world.
She crawls, pulls herself up, stands and babbles nonstop. Even though her birthmark now covers around three quarters of her body, people notice her smile long before they notice her skin. On her good weeks, you’d never know how much she’s been through.
We recently celebrated Livi’s first birthday with a butterfly-themed party surrounded by friends who are now like family to us.
They included my Saturday morning girl gang – a group of wonderful women I run with every Saturday.
They even organised a running event to raise funds for our family, so I could take leave from work to spend more time with Livi.
Looking around the room at everyone loving our little girl was emotional, because there were times during that first year when we truly thought we were going to lose her.
Before Livi, I had never heard of CMN or NCM. Through online support groups, I’ve connected with families all over the world facing the same terrifying reality.
Many people assume it’s ‘just a birthmark’, but it can be so much more serious than that.
CMN and NCM can affect the brain and spine and can be terminal.
I hope that by sharing Livi’s journey, more research and support can eventually lead to a cure for the disease.
‘Through it all, our little girl continues to amaze us.’
Nobody can tell us exactly what Livi’s future looks like, so for now we take life one scan, one appointment, and one day at a time.
And through it all, our little girl continues to amaze us.
Thanks to surgeries, needles, scans, ongoing chemo and endless hospital stays, little Livi has endured more in her short life than most adults ever will, yet she still wakes up smiling.
My little warrior is the bravest person I’ve ever known.
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