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Parents of Izzabelle Jones warn adults not to stare at birthmarks because of congenital melanocytic naevi

After a normal pregnancy Lucy Jones could not wait for the birth of her first child.

But her joy turned to shock when she noticed that her beautiful daughter Izzabelle was covered in birthmarks.

Two months later Izzabelle was diagnosed with a rare genetic disease, called congenital melanocytic naevi (CMN), which affects just one in 20,000 babies.

Izzabelle Jones has a birthmark she calls her 'button' between her eyebrows
Izzabelle Jones has a birthmark she calls her 'button' between her eyebrows

The condition, which is largely untreatable and was only recognised six years ago, can cover 80% of the body.

Izzabelle is now two and she her family are learning to live with CMN, so much so that she has been selected as an ambassador for Rare Disease Day today.

The cheerful toddler is not shy about showing off her moles, which are all over her body, and refers to the mark on her brow as her button.

Miss Jones, 20, said she and her partner Kevin Smith, 25, had never heard of CMN before Izzabelle was diagnosed.

They have a second daughter, three-month-old Emily, who is unaffected by the condition.

But the family still have to put up with the stares and harsh comments from people who are unaware of CMN.

Miss Jones, of Hawser Road, Rochester, said: “We understand that children can be cruel, but is unforgiveable for adults.

“We wish they would just ask questions rather than stare at our daughter. She starts nursery school soon, so we are obviously a bit wary.

“But Izzabelle is okay with it and even shows off her moles to visitors.”

Izzabelle Jones with mum Lucy
Izzabelle Jones with mum Lucy

One of the more serious side effects for Izzabelle is epilepsy as one of the moles has reached the left hand side of her brain.

She also has eczema and, like other sufferers, is prone to skin cancer.

Lucy said: “It is more difficult for us in the summer, when we have to keep her covered up and not let her outside in dresses.”

Izzabelle has just celebrated her birthday and hosted her own party.

"We wish they would just ask questions rather than stare at our daughter" - Lucy Jones

Lucy said: “The funny thing is that she had facepaint on and people could not see her button.

"The other children kept coming up to her and saying, ‘you can’t be Izzie’.”

The tot still has to attend appointments at Great Ormond Street Hospital in London to monitor whether the moles have increased or changed colour.

Lucy said: “Most of the marks are too deep to remove and she will have to live with it for the rest of her life although we are hopeful that some, including the one on her face, might be surgically treated.”

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