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Carol Fenner and Thiago Tavares were initially shocked when their four-month-old daughter Luna Fenner was born with the distinctive mark, which is known as a giant congenital melanocytic nevus (GCMN) and affects just one in 20,000 newborns worldwide. However, an MRI scan proved they shouldn't be concerned.
Shortly after that they decided to set up an Instagram page to help raise awareness of birthmarks, which has been buoyed by positive comments, with many of her 70,000 followers sweetly dubbing Luna a “little butterfly."
But shockingly, the baby has also been subject to horrific trolling.
“A lot of her followers call her little butterfly because of the shape of her birthmark," Carol said.
“We were even sent pictures of people from all over the world who had painted their faces like Luna's. When I saw them, I was overcome with emotion that they had stopped what they were doing to try and send us positive thoughts," she continued. “But we also get some horrible comments. The worst we had was a man who said, 'Wouldn't it be better if we killed her than lived so close to a monster like Luna?' I think people are shocked when they see her, and I would be too, but I just want people to think about their reaction."
When Luna was born Carol was nothing but concerned for the well-being of her daughter.
“Two minutes after they took her away, a doctor came and said that we had to prepare for it being cancer. It was like, 'Oh my God, what is happening?'" Carol recalled.
“It's so rare the doctors didn't know what to do. They weren't prepared for it," Carol added.
Carol has diabetes, so after falling ill with out-of-control blood sugar levels following the stress of a 48-hour labor, she was too ill to see Luna again until she was two days old. Meanwhile, she frantically searched online for information about what the mark could mean.
“I was asking the doctors if it could be something like measles, but they warned me to prepare for something bad like cancer. It was so frightening to keep hearing that word," she continued. “It's impossible to know before babies are born whether they will have this mark. We had a 4D scan, which showed that she had a lot of hair, but nothing to show she had a birthmark."
Luna, whose name means 'moon' and 'light,' had an MRI scan on her neck, face and brain when she was six days old, with the results three days later confirming the mark was not cancerous.
A visiting dermatologist to the hospital then diagnosed her with a CMN.
“We breathed such a sigh of relief and were discharged and told to visit the dermatologist in three months' time. But I didn't want to wait, so within a month we visited the first plastic surgeon," she added.
According to Caring Matters Now, around one per cent of newborns have a CMN, with one in 20,000 babies diagnosed with the same giant form as Luna.
The birthmark is caused by genetic changes while the baby is in the womb, the charity says, and is not inherited. It has a one to two per cent chance of developing into a malignant melanoma over the newborn's lifetime. Carol and Thiago have been told that their daughter's mark will grow proportionally as she gets older.
After weighing up both the risk of the CMN one day developing into a cancerous melanoma, and fears that Luna may be targeted by bullies when she gets older, her parents decided to try and find a surgeon who could remove the mark while she is still too young to remember having an operation.
“I'm so worried about her getting bullied and what it would do to her self-esteem," Carol said. “We receive hundreds of messages a day through our Instagram. About 80 per cent of those are from people saying that they have the same condition and have suffered from years of bullying. I don't want my daughter to have to go through that."
“When we go out, people will stare and point, or bring people over to look at her. It's so horrible," Carol explained. “In the past, we've been asked if she is contagious, and strangers have even called her disgusting. I just can't face Luna having to deal with that kind of thing at school."
After searching across the US, the family found a medic in New York keen to take on the case.
But, because Luna could need five or six surgeries over the next three years, costs could reach $500,000. To help raise cash, their loved ones have set up a GoFundMe page, which has already gathered almost $20,000 worth of donations.
“We saw many surgeons telling us different things, because what Luna has is so rare. Some would say they need to wait until she's older, and others that it needs doing straight away," Carol said. “Some suggested laser surgery, instead of just removing it, but I've spoken to another mother with a child with marks a lot lighter than Luna's, and she had had 30 laser sessions under general anesthetic and needed another 50. If we have it removed when Luna is 10 years old, it's likely that she would remember it. And the results would not be as good as there would likely be more scarring."
For now, Carol continues to raise awareness via her Instagram page, and hopes Luna will take comfort from all the positive messages when she is older.
“I want to show Luna that a lot of people were sending her good vibes, and to show other people difference and what beauty looks like," she said. “To us, Luna will always be beautiful and we tell her all the time."
“She is such a calm baby, she never cries and she's really happy. She smiles all the time," she added. “She is like any other baby but we do need to avoid the sun. It's really important to protect the mark using lots of sunblock and avoiding being directly in the sun. We're in this situation now where we really don't know if we're going to get the surgery. But I will keep trying. I want Luna to know when she's older that I'm doing everything I can to help her."
Dr. Barry Zide, professor of plastic surgery at NYU Langone Health in New York explained Luna may need five or six operations starting immediately. He said the procedure would involve placing tissue expanders to try and promote the growth of healthy skin, removing the majority of the nevus starting with the cheeks and forehead and using skin grafts to complete the procedure.
“The chances of malignancy here are very low but the key is to get this off with minimal complications before Luna starts school," Dr. Zide added.
“This child has a great chance to look very well if the procedures are performed with a planned approach," he added.
To donate click here and you can follow Luna on Instagram @luna.love.hope