Little Poppy Chester has a more severe form of the little known condition Congenital Melanocytic Naevi (CMN), which causes often quite large brown or black moles to appear as a giant 'birthmarks'.
CMNs affect one in every 20,000 newborn babies, some born with the marks on their faces or covering sometimes nearly all of their bodies.
In Poppy's case the mark is on her head and is hidden by her mass of dark hair, but she also has 'satellite' birthmarks all over her body.
Those with large CMNs can also have an increased risk of developing skin cancers, and can suffer from fits and have learning difficulties.
Small CMNs - measuring less than one inch - will also be found in about one in 100 newborn babies.
Poppy's mum, Kirsty, husband Mark and their two other children, 11-year-old daughter Ysobel and seven-year-old son Max, who live at Chaigley, are now hoping to increase awareness of the condition and at the same time raise funds for the even lesser known CMN support group, Caring Matters Now, by organising a family disco in Longridge.
The disco will be held at St Wilfrid's Club on Friday, March 19, from 7pm-10.30pm.
Recalling Poppy's birth at the Royal Preston Hospital on New Year's Day, 2007, Kirsty, who is a former nurse, says she first thought the mark was a haemangioma and while staff were very helpful at the hospital, they admitted they didn't know what it was and referred her to a plastic surgeon.
But in the meantime, Kirsty did her own research and contacted Dr Atherton, a leading CMN specialist based at London's Great Ormond Street Hospital.
"I explained what it looked like and he said it sounded like a CMN and advised me to get a referral from her own GP," said Kirsty.
The appointment at Great Ormond Street when Poppy was 14 weeks old confirmed she had CMN and she now visits the hospital every 12 months to have a check-up and sees a plastic surgeon at Preston inbetween.
Children with CMN can also suffer from moles on their brain or spinal cord which can cause complications and fortunately for Poppy a scan when she was 16 months old gave her the all-clear.
Caring Matters Now has three main aims; to support CMN sufferers and their families; to raise awareness of the condition and to raise much needed funds for CMN research.
Because of the increased risk of skin cancer, Kirsty says she takes extra care when Poppy is in the sun - by making sure she wears a hat and her arms are covered. She also says she and Poppy haven't been on a sunny holiday since Poppy was born.
"CMN is such a rare condition, it doesn't receive very much interest," says Kirsty, adding that she also wants the fundraising events to raise awareness of the potential risks of skin cancer to everyone.
"Besides the disco, there will be a raffle, games and something for the grown-ups and we will also be serving hot dogs and there will be a licensed bar and soft drinks for the children" said Kirsty.
Tickets, available from Kirsty by ringing 07967719529 are £5 for adults, £2.50 for children aged from two-16 and £15 for the whole family (two adults and three children). Hot dogs will be served and there will be a bar.