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The mother of a small boy at risk of brain injury if he eats too much protein urged the NHS to provide a "life changing" treatment not available in the UK.
Stanley's three-year-old son Jessica Brown is forced to follow a severely restricted diet after being diagnosed with rare phenylketonuria (PKU).
The genetic disorder – which affects only one in 10,000 babies in the UK – means that it is unable to break down an amino acid into proteins that can reach dangerous concentrations in its blood.
Now, Stanley's family has asked the NHS to offer a drug called Kuvan that has successfully treated PKU patients across Europe.
Jessica says Stanley must avoid meats, nuts, fish and dairy
He comes after a decision of the High Court last year forced the NHS to reconsider its decision to refuse to fund the treatment of a seven-year-old autistic boy with PKU.
Ms. Brown from Halesowen in the West Midlands told Sky News: "This treatment would change Stanley's life.
"To pay for it ourselves, it would cost £ 15,000 a year while Stanley is small, which would go up to £ 30,000 a year when he is an adult.
"But even if we could afford it, the systems are not in place to allow its administration.
Jessica Brown and her husband Matthew with their three-year-old son Stanley
"Why not offer treatment available in so many other countries? My little boy needs it."
Brown said Stanley must avoid eating meat, nuts, fish and dairy products because of his health and that even some vegetables are restricted.
"Wherever we go, we have to take our own food," she added.
"It's a huge pressure for me and my husband, as well as for Stanley's grandparents and his crib because he's got too much protein, it's extremely dangerous."
Kuvan was licensed in 2008 and is used as a standard treatment for PKU in a large number of European countries, according to the National Society for Phenylketonuria (NSPKU).
Jessica urged the NHS to offer the drug Kuvan in the UK
They include Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, France, Germany, Hungary, Italy, Latvia, Lithuania , Luxembourg, the Netherlands, Norway, Portugal, Romania, Russia, Slovakia and Slovenia. says the charity.
The NHS is expected to re-evaluate Kuvan's funding later this year, according to NSPKU.
A spokesperson for the National Institute for Health Excellence (NICE), which approves drugs made available on the NHS, said: "At the request of NHS England, NICE was asked to review Kuvan as part of his selection process.
"The topic should be discussed by the group in September and if there is a consensus with all decision makers, the work will start on evaluation in September".
NHS England declined to comment when contacted by Sky News.
:: A group of parliamentarians is participating Thursday in a diet challenge to limit their protein intake to 10g per day to raise awareness of the difficulties of living with PKU.
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