Eva Jones shares many of the same traits as any other nine-year-old - she loves being with her friends, playing computer games and being outdoors.

But there is one thing about the Hethersett youngster that she shares with only around 400 other people worldwide - an incredibly rare genetic condition called KBG syndrome.

The condition, which is named after the initials of the family it was first detected in, is only thought to affect one in 19m people, with only around 400 cases confirmed worldwide.

And despite her family knowing that something was up with her, it was not until a few weeks ago that her parents were finally given the answer they had searched years for.

From the moment her mother Gemma went for a 20-week pregnancy scan it was clear something was different about her daughter, when the scan detected an extra finger on each of her hands.

It was suspected she may have Down's syndrome, but tests for the condition were never positive.

But it was clear from the differences between Eva and her twin brother, Ace, that something about her was not quite right.

On just the second day of her life doctors discovered she had a heart murmur - while Ace was perfectly healthy and unaffected. When she was 10 months old she had surgery on her heart to address this.

And in the years following, Eva endured further difficulties, regularly suffering migraines and lethargy. She also has poor eyesight and hearing and developed at a much slower rate than children her age.

For years her family fought for a diagnosis and in early 2020 she was sent to Addenbrooke's in Cambridge for blood tests to finally find out what had caused her trouble. Two years later and the answer arrived.

Mrs Jones, who also has a 17-year-old stepdaughter called Poppy, said: "We had always known she had some kind of condition and that it was genetic but when we found out just how rare it was it was a huge shock. Hearing your child has something only 400 people in a world of seven billion is just unbelievable.

"However, knowing what it is has meant we have been able to research it, find support groups and learn more about what her life will be like."

Mrs Jones said the condition means Eva will likely never be able to live completely independently and that any children she had would have a 50/50 chance of being born with KBG syndrome too.

But she said the condition has not hampered Eva and had not stopped her from growing into a happy, friendly girl.

He said: "She is one tough cookie who has taken so much in her stride. She loves being with her friends and even tried parkour recently, which she absolutely loved.

"The chances of her having an independent life are very slim though and we know mainstream high school wouldn't be right for her, so we've taken the decision to home school her. She is already independent in some aspects of her life though - she constantly surprises us."

But for Mrs Jones and her husband Neil, finally knowing what the family is dealing with is a huge help.

She said: "It's bittersweet really. Obviously you want to find out that everything is fine and clear, but we knew that wouldn't be the case. We were well aware that something was wrong, but now we have something to call it and we know how to deal with it.

"My message to any parent is be persistent - you know your children the best and if you know something is not right with them, do not stop looking for those answers.

"We knew things were wrong with Eva, but if we did not keep following it up, we would never have found it.

"We just want to get the message out to keep fighting for what you know is right."