After suffering a number of strokes, Marie Lochrie (17) was recently diagnosed with the very rare condition Moyamoya and her only chance of survival is complex surgery.

But this comes at a cost – around £40,000 if Marie, who also has Down Syndrome, is to be treated in the USA, where the only known specialists work.

Moyamoya is a brain disease which affects one in two million people. If left untreated it blocks the flow of blood and oxygen going from the main arteries in to the brain. This causes the sufferer to experience mini-strokes and haemorrhaging.

Without surgery Marie's outlook is bleak.

Her parents, Michelle and George, of Christie Terrace, Stenhousemuir, have described the youngster's condition as "living with a timebomb."

In May the family first became aware that something was not right with Marie.

Michelle (40) said: "We sent our bubbly girl off to school, but I then got a call to pick her up at lunchtime.

''I went to collect her from the medical room and could see her face was drooping.

''As I took her along the corridor, I felt her left side give way.

''I phoned an ambulance and called my husband. She was still conscious but it was as if she didn't know what was happening."

At first the doctors thought Marie had Bell's Palsy, but a CAT scan showed she had fractures in the brain – signifying brain damage.

An MRI scan then confirmed that Marie, who is also registered blind, had suffered a series of mini strokes.

Michelle said: "We didn't know how long the strokes had been happening – it all came as a bit of a shock. After that she was left incontinent and, even when she came home, she was still suffering.

"She still has very little control over her leg, she just drags it and spends a lot of time in a wheelchair."

Doctors then thought Marie was suffering from epilepsy. It was only after an MRI scan that specialists began to mention the condition
Moyamoya, but because it is so rare it was not initially considered.

Michelle and George (51) researched it on the Internet and found that the symptoms matched Marie's.

It has now been confirmed that Marie has the condition. Moyamoya can effect anyone, but those with Down Syndrome are three times as likely to get it.

Surgery, involving a procedure where small holes are drilled into her head and blood vessels re-aligned to encourage new growth, is now Marie's only hope.

The teenager is waiting to be assessed by a neurosurgeon to see if she has to go overseas for treatment, and Forth Valley NHS is looking into operating on Marie in the UK, although the chances of a specialist being found are very slim.

The family have been in touch with a surgeon in Boston, Massachusetts, who has operated on others with Moyamoya, but going to the States would prove costly.

Great Ormond Street Hospital in London have carried out the operation, but they only treat children up to 16 – meaning 17-year-old Marie just misses out.

A spokesperson for Forth Valley NHS said: "It's not appropriate for us to discuss the details of any individual's medical condition.
Generally, if treatments are not available locally we may consider sending a patient elsewhere in the UK."

Falkirk MSP Cathy Peattie has also got involved. She said: "The fact that the health board is looking at what might be available in the rest of the UK is positive. I will be keeping watch that they follow this through."

Marie, who attends Carrongrange School in Larbert, still suffers from mini strokes, which can last up to four hours.

Michelle said: "She knows when they are coming as she gets a tingling feeling up her side. It is horrible to watch. She also has trouble swallowing now and has lost a lot of her language.

"Without surgery it is a terminal illness. If she had a massive stroke it would kill her, but with surgery she will be stroke free and regain movement down her left hand side.

"It's heartbreaking to see our bubbly girl like this."