It takes Romi Loffler about half an hour to write a single sentence. She spells it out one letter at a time, by blinking.

The 21-year-old from Netherlee in East Renfrewshire has Rett syndrome, a genetic neurological disorder that leaves her unable to speak or move and brings a range of other health problems, including epilepsy.

Last year, after months of work, she completed the coursework for National 4 history and gained the qualification. This year she wanted to go further and pass at National 5 – which means sitting an exam.

But Scotland's exams body, Qualifications Scotland (QS), has rejected her family's requests for the adjustments she would need.

What the family asked for

About 18 months before exam time, her college and parents began talks with QS. They asked whether Romi could sit the exam one question at a time over a number of weeks, or possibly months, using a separate paper set at the same level.

They also asked whether she could use a "bank" of pre-agreed relevant words, so she would not have to spell out every letter of every answer.

QS said no. Instead it suggested she sit the exam in one go – which her mother says is impossible, because communicating with her eyes is so exhausting.

'If it can be done for GCSEs'

The decision has caused particular frustration because two children using eye-gaze technology sat GCSE exams in England earlier this year. One, who has cerebral palsy, took five months to complete the exam.

"If it can be done for GCSEs, I simply don't understand why it can't be done for Nat 5," said Romi's mother, Gael Gordon.

She said QS had expressed concern that Romi might gain an unfair advantage over other candidates. "I think she is starting from a position of such incredible disadvantage that just getting her to the starting line is incredibly difficult," she said.

"She is not wanting to be given it and given a pat on the head. She wants to sit the exam in a way she can demonstrate everything she knows. It is about proving her capacity and proving her worth... because if she gets that certificate no-one can take that away from her."

In Romi's words

Romi spelled out for BBC Scotland News how she felt. Her first word was: "Angry."

"Other students got the chance to get their National 5 and I didn't. That was unfair. I deserved the same chance as everyone else," she wrote.

"They shouldn't expect us to fit around their exam system. The exam system should adapt so that disabled students have a fair chance to show what they know. People sometimes underestimate what I can do because I am disabled. A recognised qualification gives me evidence of what I can do."

A condition long misunderstood

For years, people with Rett syndrome were assumed to have profound learning disabilities. Eye-gaze technology – which tracks where a person looks on a screen – has begun to show that many understand far more than was previously thought.

Tracey Campbell of the charity Rett UK said Romi had been dismissed in many areas of her life. "To have these extra barriers put in place is completely unfair and unjust," she said, praising exam boards in England for allowing candidates to sit papers "over a long period of time, one question at a time".

The college and QS respond

Glasgow Clyde College, where Romi studies, described her as "highly capable and committed". Claire Donaghey, its assistant principal for arts and continuing education, said: "Despite considerable discussion with Qualifications Scotland, the mitigating arrangements we have proposed have not been deemed compatible with these requirements. We remain fully committed to supporting Romi."

Qualifications Scotland said it was committed to making reasonable adjustments so that disabled learners had an equal opportunity. "This year over 39,000 learners benefited from assessment arrangements," a spokesperson said. "We also have a duty to maintain the integrity of qualifications, so must always ensure that any reasonable adjustments put in place for learners do not impact standards."

QS replaced the Scottish Qualifications Authority with a promise of a fairer, more learner-focused system. Romi's case will be seen by many as an early test of whether that promise extends to candidates who will never hold a pen.