THE mother of a young girl who faces a daily battle with a rare medical condition is calling on the NHS to provide a specialist drug to ease her burden.
Lily-Mae Scott was born with Phenylketonuria (PKU) a condition that sufferers cannot process protein through the body properly and without treatment an amino acid called phenylalanine builds up in the brain.
Untreated, PKU can lead to intellectual disability, seizures, behavioural problems, and mental disorders.
Sufferers need to eat a special diet as well as taking essential supplements as their digestive system cannot digest proteins.
Some of the food Lily-Mae needs to eat as part of her diet
The seven-year-old's mother, Kelly Thompson is calling on the NHS to change its stance on providing Kuvan, which allows people with PKU to manage their condition safely whilst eating a normal diet.
The 33-year-old said: "It's really difficult to manage for her as she just wants to eat normal food but she can't. Her brother Alan, is fine and can eat everything that he likes but poor Lily-Mae has a really restricted diet.
"If she was able to get Kuvan on the NHS, she would be able to have a more normal diet and not have to worry about food all of the time."
NHS England previously said the drug's effectiveness had not been established meaning that it was not made available to sufferers as the cost was prohibitive.
In 2007, NHS England has agreed to fund a drug costing about £100 a day for a seven-year-old boy whose condition could cause brain damage, after being told by a judge to reconsider his case.
And now campaigners are urging them to roll the drug out to all sufferers and are calling on the drug's manufacturer, BioMarin, to reduce the cost.
Ms Thompson said: "If Lily-Mae was able to take this drug her life wold be transformed. She would be able to eat the same food as the rest of us and we wouldn't have to measure out and check everything before she can eat it.
"When it comes to drinks I have to check for aspartame as she isn't allowed that too as part of the rare condition so every label has to be checked when it comes to drinks well anything.
"I have to take weekly bloods from her finger to keep an eye on her phenylalanine levels they get sent to the RVI in Newcastle – this could easily be avoided with the medication."
An NHS England spokesperson said it had a responsibility to spend taxpayer's money effectively.
He said: “The NHS does not offer a blank cheque to pharmaceutical companies, instead the NHS works hard to strike deals which give people access to the most clinically effective and innovative medicines, and at a price which is fair and affordable, which is exactly what our patients and the country’s taxpayers would expect us to do.”
Campaigners in London calling for the drug to be made available on the NHS
The petition set up by Barbara McGovern reads: "The only treatment funded by the NHS is an extremely restricted diet containing virtually no natural protein. The majority of the normal food that most people take for granted is off limits. People eat special medical foods and supplements. The diet is lifelong and people find it stressful and difficult to cope with it. If people eat the wrong thing they can suffer damage to their health."
Anyone wanting to sign the petition can visit www.change.org
The American-based company was approached for comment.
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