Family finds out baby’s ultra-rare birthmark is cancerous

By Filipa Gaspar

A family has launched a fundraising appeal for their baby with an ultra-rare birthmark - after tests show it is cancerous.

Ten-month-old Macey-Mai was born with giant congenital melanocytic nevus (GCMN), a benign, tumor-like malformation.

It results from faulty development of pigment cells and covers her entire back as well as the sides of her stomach, scalp, legs and arms.

Mom Katelyn Clarke and dad Dainen Milne, 23, were "completely shocked" when medics spotted the dark mark.

Macey-Mai had seven lesions removed from her largest birthmark in August 2025 at Great Ormond Street Hospital, London.

These were all sent for genetic testing and a biopsy to check if they were malignant.

But after months of waiting for the results, they received the heart-breaking news that one of the lumps was in fact malignant.

Tests have shown there is a cancerous change within Macey’s largest birthmark which could potentially become seriously dangerous.

Katelyn, 23, from Plymouth said: "I have never cried like that before, my heart’s been broken since we received the news that one of the lumps was malignant.

"It has been very hard to comprehend.

"I knew that with this condition you would probably face malignancy at some point but they said that’s when you are an adult.

"They never say that you can be born with it so it’s devastating to know that it’s already the case."

The National Library of Medicine says the condition affects 1 percent of newborns, with 1 in 20,000–500,000 live births being reported with GCMN.

It can vary in color from tan to black, and the surface can be flat, raised, rough or bumpy and it's larger than 20cm.

Katelyn said that she has to monitor her daughter's birthmark for the next few months to see if there are any changes to it.

She said: "They want me to monitor it by checking any bleeding, any changing in size because any change will probably warrant that there’s melanoma within her nevus.

"Every single day I have got to take photos, to sit there and look at every single inch of her.

"Any changes, even the smallest changes can warrant the worst."

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Katelyn added she has to buy special sleep suits for her to make sure she is comfortable when lying down due to her irritable skin.

She said: "Her skin is completely irritable.

"The second she is on her back even if she's in a chair she is rubbing her back.

"We've had to go out of our way and purchase special sleep suits for babies with eczema just so she can sleep a bit better at night.

"It doesn't really help but I'm spending £26 on just a single suit - that's a lot.

"We use around 10 of those per week."

Katelyn, who has other two children, says that constantly traveling to appointments makes it difficult for them to spend family time together.

In the last 10 months they have attended dozens of appointments in London.

Katelyn set up a GoFundMe page to help raise money to support her family while they make regular trips to Great Ormond Street Hospital in London for Macey’s care.

She said: "It's extremely hard to navigate being a parent of three but also being a parent of a baby with such a rare condition."

She added: "But in the last 10 months we have managed to raise £20,000 which has helped massively to ensure Macey-Mai could attend continuous health care appointments in London helping to cover the cost of travel expenses and everything needed while we are away.

"Not only this but donations have helped provide Macey with everything absolutely necessary for her and her journey so far living with CMN."

Macey is soon celebrating her first birthday.

Katelyn said she wants to give her daughter her "best birthday ever".

"We will never know if it is going to be the last," she said.

"But it's so hard to afford it with all the trips to London."

Katelyn Clarke, said she had a normal pregnancy and nothing was detected at her ultrasounds.

Until she gave birth to the tot naturally on May 7 2025, at University Hospitals Plymouth, weighing 5lbs 15oz.

You can donate to Macey-Mai’s GoFundMe here.