A mum-of-two who only discovered her daughter had a rare genetic disorder after Googling her symptoms is now raising awareness of the condition.

Julie Andrews, from Longfield, says doctors had initially suspected her daughter Ella, seven, had autism before investigating further herself and discovering her little one has something called Rett Syndrome.

The genetic disorder occurs most often in girls, more rarely in boys, and leads to severe impairments, affecting a child’s ability to speak, walk, eat, and even breathe easily.

It was not until Ella hadn't started walking or talking at two that parents Julie and Adam first suspected something might not be right.

Julie, 43, said: “When we raised it with the health visitors, they were looking at it as if she had autism so we were going down that pathway – then she developed epilepsy on top of that and started having seizures.

“When I looked into the correlation I came across Rett syndrome and I was reading about it. I thought ‘yep, she ticks that box, she ticks that box, she ticks that box’ so I spoke to her doctor about it.”

At five, Ella was diagnosed with the rare genetic disorder which typically affects 1 in 10,000 girls.

Julie added: “It means that Ella doesn't develop normally.”

The now-seven-year-old is non-verbal, and, because of her poor motor skills, is also unable to communicate via sign language.

Like other children with Rett’s, she struggles with breathing and often hyperventilates and then holds her breath.

Her involuntary hand movements and inability to walk mean the tot needs around-the-clock care at the family home in New Barn Road.

To other mums, Julie says: “Follow your gut - if you think something is not right then push to be seen.

“Don’t be fobbed off. You know your child best and when something is not right.”

Despite her challenging condition, Ella's mood has not faltered.

“She’s such a happy child, she is always smiling,” added Julia.

“She loves people whether she knows them or not - she is just a joy to have around.”

But, as she gets older and bigger her needs are increasing.

She is entirely dependent on her family - Julie had to give up her job of 14 years in the ambulance service to care for her full-time.

To help them look after Ella, and improve her quality of life, they are in need of specialist equipment.

The Custodians South East - a motorcycle club made up of serving members of the armed forces, veterans and emergency services - has stepped in to help the family find the funds.

The tot had previously only been given a basic wheelchair by the council but the group has helped raise money to get her a particular wheelchair that will allow her to recline and be comfortable when sleeping.

The family, which includes sister Millie, are also hoping to raise enough to transform their bathroom into a wet room and purchase a mobility car.

Julie said: “We have had to fight for everything we’ve got for Ella so far.

“I’ve had to call, push and fight for everything but sometimes there is only so much fight you’ve got.”

Though part of the equipment costs will be covered by Ella’s mobility allowance, it would still fall short of the amount needed.

To help raise the remaining sum, the motorcycle club has set up a JustGiving page which you can find here.

They will also be holding a pub charity event in Southampton on October 12 with all proceeds going directly to Ella.