The first thing you notice about Olivia Grace Herriman Sheahan is her big smile and sparkling, bright eyes. She is a happy, beautiful baby girl – and she is also fighting for her life. 

She’s not yet 1 but the little girl known as Livi has already survived multiple brain surgeries and is undergoing chemotherapy to try to stave off a rare disease. 

Her mother Harmonie Sheahan spoke to senior journalist Anna Leask about Livi’s journey. 

Livi has been through a lot in her first year of life including multiple brain surgeries and chemotherapy. Photo / Supplied 

When Livi was born, she had what appeared to be a birthmark across three-quarters of her body. 

Harmonie Sheahan and her partner, Jason Herriman, weren’t concerned initially. All they saw was their adorable daughter. 

Their lives were turned upside down when doctors discovered that Livi’s marks were a rare and potentially fatal condition that has no cure. 

“She was born with a really big birthmark called CMN [congenital melanocytic nevus],” Sheahan said. 

“Livi has a giant congenital melanocytic nevus, which is even more rare. CMN affects one in 500,000 people, but a giant CMN is rarer than that. 

“It happens early in pregnancy, the first trimester, and it’s basically deposits of too many pigment cells in one area. Unfortunately, it can sometimes happen internally as well, and it can cause a condition called neurocutaneous melanocytosis [NCM].” 

Livi had an MRI when she was a month old and it came back clear of NCM. 

When she was three-and-a-half months old, she became unwell and had to undergo emergency surgery because doctors found fluid on her brain. 

“She recovered well from that and then when she was 5 months old, she had shunt failure... and so she had to have brain surgery again to correct the shunt and put a new shunt in,” Sheahan said. 

Livi and her mum Harmonie Sheahan. Photo / Supplied 

“We carried on as normal, and she then got some fluid build-up in a different area of the brain when she was seven-and-a-half months old, and so she had to have brain surgery again to insert another stent in a different area of the brain so it could drain the fluid. 

“When that happened, her doctors and specialists were a bit worried about disease progression in the brain because, after the first surgery... an MRI confirmed that she had the NCM, so she had spots on the brain and the spine.” 

It was decided Livi would be put on medication to try to prevent the spread of the disease in her brain. 

She began taking Trametinib, a targeted therapy that blocks cell growth signalling pathways, along with a type of chemotherapy to slow the growth of the disease in her brain and spine. 

“It’s been a really tough road and the hardest part is not knowing what lies ahead. Because it is such a rare disease, there are no clear timelines and no definite answers,” Sheahan said. 

“Her dermatologist has been absolutely outstanding; we are so lucky to have her – she was involved in the studies of CMN with UK and American doctors, so she knows this disease. 

“She consulted with overseas doctors and they decided they wanted to start Olivia on these drugs, which aren’t funded by the Government because it’s such a rare disease. She wrote an application to Pharmac to get the drugs funded and she had it approved. 

Baby Livi has a very rare condition. Photo / Supplied 

“They are using Livi as a case study to learn about the disease and how the drugs affect and work on the disease. They’ll document this and learn from it for other cases.” 

Livi has also undergone genetic testing. Biopsies were taken and tested in Sydney to learn more about the specifics of her condition. 

“They wanted to know whether the CMN cells have the cancer gene in them and what gene mutation she has because that then gives them an idea of how to treat it and what’s coming, what to expect,” Sheahan said. 

“Her gene mutation came back as NRAS, and the NRAS gene mutation is the growth gene, unfortunately, which means the disease can just grow and grow in her brain, which would cause brain damage and death. 

“So they’re hoping that the chemotherapy that she’s on will inhibit the growth of the disease.” 

Harmonie Sheahan and Jason Herriman with their daughter Olivia Grace - known as Livi. Photo / Supplied 

Livi has an MRI booked for June to further gauge her condition. 

“We’re hopeful it will give us a clearer picture of what is happening – whether the drugs have worked, and whether the disease has grown or remained stable,” Sheahan said. 

Sheahan said seeing her daughter go through so much in her first year of life had been “a really tough road”. 

“The scary part is we don’t know what’s to come because it’s such a rare disease that they can’t give us timelines and they can’t give us actuals.” 

She said Livi was coping brilliantly with everything life had thrown at her. 

“My little poppet, she’s so amazing,” she said. 

“It’s so much… and through it all, she just continues to smile and be happy and she’s just such a joy to be around.” 

Sheahan and Herriman both work fulltime and Livi goes to daycare when she is well enough. 

“It’s just awful when she has chemo, and I have to send her to daycare, and they phone, and they say, ‘we can’t settle her’ or ‘she’s vomiting’, and then I have to take off from work to go and get her. 

“Chemo makes adults feel awful, so of course, it’s going to make her feel awful. But she really is such a trooper. 

“It’s really tough… It’s been the hardest year of my life, honestly. I thought I knew what stress felt like but this is a whole different kind of stress.” 

Livi with her parents Jason and Harmonie. Photo / Supplied 

Sheahan said she worried about Livi constantly, which added to the stress. 

“You worry about every little thing because every little thing could be the disease. Even if it’s a little vomit from a tummy bug, could it be the disease? Could she be having more fluid build-up on the brain? 

“If anything happens, you wonder if it’s linked, and you become a little bit neurotic. 

“But her dad is amazing. He’s very positive and very strong and he keeps me laughing and smiling – and her. He’s got a sense of humour on him like you won’t believe… and for that I’m thankful as well because it keeps me positive.” 

More than $19,000 has been raised for Livi and her family, mainly through an event in Auckland at the weekend and a Givealittle page. 

Sheahan belongs to a running club, the Early Bird Run Crew, and they meet on weekday mornings. A second group meets on Saturdays. 

The group organised a fundraising run for Livi on Saturday at Hobsonville, collectively covering more than 890km. 

Sheahan said her friends had been her “pillar of strength” since Livi was diagnosed. 

“They’ve just been right by my side through it all, they’re so amazing. I’m so thankful to them,” she told the Herald. 

“They wanted me to have a little bit of funds if I need to take time off work. They know I feel terrible having to send Livi to daycare when she is having chemo so they wanted to raise funds so that if I need to take off to be with her and take unpaid leave, I can. 

“I’m just so appreciative. The support [on the Givealittle page] has just blown me away… It’s been great because I’m already running out of leave and sick leave due to taking off to look after Livi, so I am really grateful.” 

Sheahan is sharing Livi’s story to raise awareness about her condition. She hopes it will help other people struggling with similar health struggles. 

“Raising awareness is my number one priority – obviously, after caring for Livi,” she said. 

“People don’t know about it. I didn’t know about it before Livi was born and I think it’s so important that people know and they’re aware. 

“From day one… I’ve shown people Livi’s big birthmark and her spots, because I want it to be the norm. It’s the norm for her, that’s how she is. Other people may stare at her and look at her funny, and I do worry about bullying, so it is my number one goal to create awareness and let people know it’s not just a birthmark. 

“And I want to create an awareness for people that it takes nothing to be kind, but if people don’t know what you’re going through, how do they know to be kind or to give extra support?” 

Sheahan was also determined that Livi would have as normal an upbringing as possible. 

“We don’t have a ‘normal’ life, but I try my best to create normality for her in her journey,” she said. 

To visit the Givealittle page for Livi, click here. 

Anna Leask is a senior journalist who covers national crime and justice. She joined the Herald in 2008 and has worked as a journalist for 20 years with a particular focus on family and gender-based violence, child abuse, sexual violence, homicides, mental health and youth crime. She writes, hosts and produces the award-winning podcast A Moment In Crime, released monthly on nzherald.co.nz