Catherine and husband Shoichi live in
East Sussex, with daughters Luca (8), Lanna (5) and Ami (3).
When Luca was born, her mother Catherine did not
immediately register there was something different about her. “I was
handed my beautiful baby, and I saw she had a long tuft of hair on her
face, like an owl,” she says. “But I thought perhaps it was something
lots of babies are born with. It was only when the dermatologist came to
see us and told us it was coming out of a mole that I started to
realise that other people were concerned about it.”
Within a few months, a Great Ormond Street Hospital specialist told
the family that Luca’s mole was a naevi, caused by Congenital
Melanocytic Naevi (CMN), a genetic condition resulting in large dark
brown, often hairy moles that are present at birth. It is thought they
may be caused by changes in the body’s instructions to make normal skin.
“We were told we could have it removed, but no-one could guarantee
the result,” says Catherine. “From what we were told – and from the one
‘before’ and ‘after’ shot we saw - we would be replacing it with
scarring. We had a beautiful baby with something unusual on her face. We
felt that changing it would be for other people so we left it.
Ultimately, it will be Luca’s choice.”
The condition also has associated underlying medical complications,
including the risk of brain or spinal tumours. “Luckily, Luca doesn’t
have any other complications, although we have been told that, like all
CMN kids, she has an increased risk of melanoma so we have to be very
careful in the sun,” says Catherine.
The family contacted support group Caring Matters Now and through
them have made friends with other children with naevi. They will also
attend CMN’s first Family Activity Weekend, where Luca and other CMN
children will be able to meet up and do activities like swimming without
drawing unwanted attention because of their moles.
“Although she is a happy, confident child – perhaps because of having
to deal with this from an early age – Luca does sometimes say, ‘I wish I
could take my birthmark off sometimes then put it back on later’”,
says Catherine. “She’s been on the Family Fun Days and loves them
because she can feel like one of the ‘gang’, and I’m sure she’ll love
the Family Activity Weekend, too. It’s brilliant that Jeans for Genes
are providing funding.”