A bubbly three-year-old girl could soon be able to walk and talk for the first time after she was diagnosed with a condition which affects just 500 people in the world.
Fields Taylor has Glut1 Deficiency, which means her brain is starved of energy because her body cannot produce and transport the glucose it needs to function properly. While the condition is complex and hard to manage, her parents, Stevie and David, of Asfordby, are thrilled to finally know why their daughter has been poorly since she was just 15 weeks old.
Now she has been diagnosed, Fields can begin a specialist, high-fat diet designed to combat the condition.
The treatment could see her walk within months and begin to learn to speak – skills her parents feared she might never develop.
Mum Stevie, 34, said: "When the doctor finally gave us a name for Fields' condition, it was just amazing.
"People say they don't like to be categorised, but actually all we strived for was a label.
"Not we know what she's got, and what we can do – and for them to tell us it wasn't our fault, that there was nothing we could have done, meant a lot."
Fields appeared healthy when she was born, but at 15 weeks suffered her first seizure, while her mum was feeding her.
She was rushed to hospital but after dozens of tests – and more seizures every three to six months – doctors had no idea what was wrong.
Stevie, an accountant, said: "The tests were coming back negative, and while it was a relief when you found out it wasn't something serious, we still had no idea what it was.
"All you want is for your child to be the same as everyone else."
As she grew up, Fields did not learn to sit or stand at the same rate as other youngsters her age, and cannot speak.
Stevie said: "The easiest way to describe it is she is constantly running on flat batteries. She can stand holding on to furniture for a little bit, and she can walk a few steps holding on to your hand, but she is non-verbal."
After one seizure just before Christmas, tests revealed Fields' sugar levels were low.
That finding prompted doctors to do more tests and, coupled with information discovered by geneticists at Leicester Royal Infirmary from DNA and blood samples taken a year earlier, experts finally found out why Fields was poorly.
Doctors told Stevie that some of Fields' genes were missing, and the deletion in her DNA had caused her to have Glut1.
There is no known cure for the disease, which affects just 25 people in the UK, but children can be helped with a special diet called the ketogenic diet.
Low in carbohydrates and sugar – which Fields' body cannot turn into energy for her brain – the diet is high in fat, forcing her brain to use this as its primary and alternative energy source.
"She can't have cake, she can't have sweets, she can't have McDonald's, and that is her diet for the rest of her life," said Stevie, who will start Fields on the diet this week.
"It is going to be very, very hard.
"For example, they have said she can maybe have a digestive biscuit – but only if she has no other carbs that day and it is covered in butter.
"Fingers crossed it will work. There are no guarantees but the consultant said that one other boy he saw with it was barely able to walk properly, and then three weeks after starting the diet he waltzed into this office and he had to question whether it was the same child.
"We can only hope and keep our fingers crossed."
Fields' consultant, Dr Mark Sharrard, specialises in metabolics at Sheffield Children's NHS Foundation Trust, and has a monthly clinic at Leicester Royal Infirmary.
He said: "Fields' condition is very unusual. We are aiming to treat her with a ketogenic diet, which has been shown to significantly benefit patients with this condition.
"There is an active research project into a new treatment of this condition in America.
"We hope this trial will yield positive results for families, and I would aim to give any new treatments of proven benefit to my Glut1 patients here. We will continue to treat Fields and support her for as long as she needs our care."How you can help Fields' mum and dad want to take her to a conference in Texas in July, where they can meet the doctor who discovered the syndrome and world-leading specialists to find out about the rare condition. It will allow them to meet other sufferers and get tips on coping with the strict diet. The trip will cost £5,000. They are hosting a barn dance in Asfordby Village Hall on June 22, and are looking for individuals and companies to donate raffle prizes. To donate a prize, e-mail: firstname.lastname@example.org To donate money, visit: http://gogetfunding.com//fields-and-glut-1-1