A young woman with motor neurone disease is being denied an "incredible" new drug that slows the devastating decline caused by the condition.
The family of 19-year-old Lillia Jakeman say she has been refused access to Tofersen after becoming the victim of a postcode lottery.
MND patients in other parts of the country are receiving the drug, but Lillia is among those having to face the future without it.
Now a crowdfunding campaign has been launched in a bid to obtain Tofersen privately and delay the onset of the worst symptoms.
Lillia, of Romsey, is thought to be one of the youngest people in the UK with MND.
Tofersen has been shown to slow the progress of motor neurone disease (Image: PA)
In a heartbreaking That's TV video shared on Facebook she says: "I'm not able to walk independently, I've got weak hands, and my arm strength is bad.
"Motor neurone disease will eventually affect your speech, your swallowing, and your breathing. To get access to this drug means I don't have to worry about that until maybe much later.
"Every day I wake up fearing I have lost something, and that's a horrible state to live in mentally.
"I'm hoping that with access to this drug I don't have to have that worry. There have been proven incidents where people have got a little bit better from it.
"It would give me a chance to live. I'm only 19 and I haven't lived."
Tofersen has been shown to slow the progress of motor neurone disease (Image: PA)
The pharmaceutical company Biogen is currently providing the NHS with Tofersen for free, but administering it involves monthly injections into the spine.
The cost and staffing implications mean some patients are being denied the drug.
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Lillia's stepmother, Gloucestershire GP Rachel Jakeman, said University Hospital Southampton had declined to give her Tofersen on the grounds it had not been fully appraised by the regulatory body NICE.
She added: "Symptoms started to emerge about four or five years ago but she's got a lot worse in the past year and is now in a wheelchair.
"At her first appointment she was given a leaflet saying the treatment was available.
"It's like torture, knowing there's help out there but not being given it. It would almost be easier to accept if we were told that nothing could be done."
Her father, Kevin Jakeman, added: "Another 20 patients in the UK are unable to obtain treatment, just because of where they live, but my baby is by far the youngest."
Rugby player Rob Burrow is among the people who have contracted motor neurone disease. He died in 2024 (Image: PA)
Lillia suffers from what is known as SOD1-MND, which is caused by a faulty gene.
Three years ago it emerged that some patients who took part in a clinical trial had experienced improved mobility and better lung function a year after taking Tofersen.
The Motor Neurone Disease Association wants more NHS trusts to offer the drug, which it describes as "game changing".
Alex Massey, head of campaigning, policy and public affairs, said: "Everyone with SOD1-MND must receive Tofersen and this impasse is unacceptable.
"This small amount of extra resource, for something that could be the difference between life and death, allows those affected more time with their loved ones.
"Tofersen is an incredible new treatment and people like Lillia do not have time to wait.
"We are demanding the government to step in and unblock the impasse. The barriers to access need to be broken down immediately."
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A University Hospital Southampton spokesperson said: "Like all NHS Trusts, we are facing challenging times and are required to live within our financial means.
"While this drug is currently being offered for free by a manufacturer through an early access programme, unfortunately we have not received any funding to pay for the increased service capacity we need to safely deliver this treatment and closely monitor a patient's ongoing progress.
"We have therefore made the difficult decision that we are unable to provide Tofersen at this time, because doing so would mean taking resources away from other patients.
"We understand this will be deeply disappointing to families affected.
"The Trust will work towards being able to offer this treatment as soon as possible, if and when it is approved by NICE and funding is made available from NHS England."