A FAMILY is gearing up to visit the tattoo parlour once lockdown ends in a bid to raise funds and awareness of a rare genetic condition.

Little Arizona Rumball was born in February 2020 with the incredibly rare condition, Congenital Melanocytic Naevus, a type of birthmark that may appear in newborn babies.

But unlike the birthmarks we may be familiar with, the gene mutation causes large birth marks covering up to 80 percent of the body. It can also cause tumour growths in the brain and spine that can sometimes prove to be fatal.

Arizona, who has a large birthmark on her back, has more than 150 smaller 'satellite' marks.

To commemorate her first birthday, and to raise funds for support charity Caring Matters Now, family and friends will be taking part in a sponsored tattoo session, choosing to either have one of Arizona's birthmarks or the charity's logo permanently inked.

Mum Hannah Cargill said the idea for the fundraiser had been first suggested by her tattoo-hating dad, Peter.

"We were a bit shocked when he came up with it," Hannah said.

"He is not a fan of tattoos, but he will be having one on his back."

Hannah and her partner, Dan Rumball, have been supported by the charity since the birth of their daughter.

The condition, which affects just a few hundred people in Europe, can have many complications, Hannah explained.

"There are some people who just have the marks on their skin, but there are others who also have marks on and in their brain and spinal column," she said.

"Arizona is lucky, as she doesn't have any in her spine, which means her muscles function as she wants them to. But she does have a mark in her brain, so it is likely she will have some delay."

As a result of the genetic condition, Arizona, who visits the Great Ormond Street Hospital in London for treatment, has had a shunt inserted to drain excess fluid from around her brain, regular physiotherapy, and twice-yearly MRI scans.

She, along with others with the condition, is also at an increased risk of getting skin cancer.

And, alongside the hospital's consultant paediatric dermatologist Veronica Kinsler, Caring Matters Now has been a lifeline for the Clehonger couple.

"When Arizona was born, Dan wanted to know everything about CMN right away," Hannah said.

"I was in complete shock and did not want to know anything about it until about two weeks later when we went to Great Ormond Street.

"Caring Matters Now has been such a huge support. We have had Zoom conferences through coronavirus and there are regional people who are helping support us. There is also a forum where we can ask different questions."

Hannah, Dan, and seven other family members and friends including Hannah's siblings Olivia and Sebastian and parents Samantha and Peter, had been planning to get their tattoos last month, but the coronavirus lockdown has put their plans on hold until tattoo parlours reopen.

Until then, they hope they can continue to raise more money for the charity through their GoFundMe account.

If you would like to know more, or to make a donation, visit Arizona's Ink on GoFundMe.