A MUM whose young daughter has a rare condition that could result in brain damage is pleading with authorities to provide a specialist drug.

Lily-Mae Scott was born with Phenylketonuria (PKU), a rare medical condition that means she is unable to process protein properly and, untreated, can also lead to seizures, behavioural problems, and mental health disorders.

This is caused by an amino acid called phenylalanine that builds up in the brain.

The Northern Echo understands the eight-year-old is just one of two Darlington people to have the condition.

Mum Kelly Thompson, 34, is calling on the NHS to rethink its stance on Kuvan, a drug which allows those with PKU manage the condition, which it does not currently provide.

On his trip to Darlington ahead of December’s election, Prime Minister Boris Johnson told the other PKU sufferer that he would do “all he can” to make the expensive drug available on the NHS.

The Northern Echo:

Quoting this, Ms Thompson, who consequently voted Conservative, said: “I would normally vote Labour but that was one reason why I didn’t, but there has been no progress.

“I feel let down, the whole PKU community feels let down.”

For Lily-Mae, access to Kuvan “would mean the world”.

“Her life today is affected in so many ways,” Mr Thompson added. “Including her mental health. She should not be feeling sad and depressed at eight.

“There was one day she wouldn’t stop crying and asking why the government won’t pay for it, hiding behind a curtain we have in front of the door. I took her to Redcar to make her feel better as, even though she can’t have ice cream, she likes the sorbet there.

“The issues start again when we get back home. I put a photo of her on Facebook and my friends commented ‘oh she could be a model’, so I told her what were saying but she said ‘that’s only because I’m happy there - but I’m not at home’.”

Kuvan, which provided by American company BioMarin is deemed too expensive to supply on the NHS. In a 2019 cross-party letter, MPs wrote to the company urging it to reconsider its monopoly on the drug and responsibility to patients.

Despite day-to-day challenges, being unable to eat a “normal” diet, Lily-Mae is achieving highly in school, where teachers say she could “have a bright future”.

“My daughter was born like this, with this condition, she did not choose it. We won’t stop fighting,” Ms Thompson said.

Sign the petition here: https://petition.parliament.uk/petitions/300034