It has been eight years.

That’s nearly a decade Roxanne Robertson has spent looking for answers.

Last year, the 26-year-old thought she was close to finally knowing exactly what the future has in store for her daughter Lilly-Ann, but then doctors dashed those hopes. They still were not sure.

Lilly-Ann was born with an incredibly rare condition. So rare, in fact, specialists believe she is the only female in the world to suffer from it.

A defect in the MED12 gene has, before Lilly-Ann’s unique case, only affected boys because of the chromosomal differences between both genders.

Girls are born with two X-chromosomes, so if she is born with a fault in the gene within, she has another X to take over.

But because boys have an X and Y chromosome, a problem with the gene is not one their bodies can naturally fix.

While some of the eight-year-old’s symptoms match those of boys with the condition, including being born with extra fingers on each hand and feet that are curled downwards, it is not identical.

For example, male sufferers have uncharacteristically large heads and are very tall, whereas Lilly-Ann is the complete opposite.

That is where the problem lies – Roxanne has no point of reference to know whether Lilly-Ann’s condition will worsen and what other symptoms she might develop.

Roxanne, who also a full-time mum to boys William and Tommy, said: “Because it’s only ever been seen in boys and men, doctors don’t want to definitely name it as what she’s got.

“She might be different and it’s the not knowing that’s the worst.

“Her condition will one day be probably named after her.”

As well as being unable to talk, Lilly-Ann is also wheelchair-bound and cannot do complete everyday tasks, like dress and feed herself.

Currently, she travels to and from the special Meadowfields School, Swanstree Avenue, Sittingbourne, in an two-year-old static wheelchair.

Her family is now hoping to buy her a custom-made Tinytrax wheelchair that costs around £6k but will be able to give her more independence, allowing her to move around more easily.

Roxanne added: “She went and tried-out one of the Tinytax wheelchairs and you could see it in her face – it was brilliant, I’ve just never seen her so happy.”

Roxanna has set-up a Go Fund Me fundraising page to pay for the wheelchair.

To donate, visit www.gofundme.com/t85864u4