THE mother of a four-year-old boy who lives with a condition which means he has to avoid protein, has called for a potentially life changing drug to be made available on the NHS.

Four-year-old Stanley Brown, from Halesowen, was diagnosed at birth with Phenylketonuria (PKU), a rare inherited condition which means his body cannot break down proteins in food.

This can can lead to harmful levels of protein building up in the blood stream which can cause brain damage and seizures.

The youngster has to follow a severely restricted diet to avoid foods with protein such as meat, dairy, nuts and fish, which has a profound effect on his family's daily life.

His mum, Jessica Brown, has been an avid campaigner for people living with the condition, and is calling for a new drug to be made available on the NHS for Stanley and other sufferers in the UK.

Jessica wants to see a drug called Kavan be made available on the NHS, which is already licensed and successfully used to treat PKU sufferers in Europe.

The NHS has so far turned it down due to its cost.

The drugs could potentially change Stanley's life, Jessica said.

She explained: "The medication would open Stanley up to other food and would allow him to eat more freely."

She said that Stanley misses out on a lot due to his dietary needs and finds it it difficult to join in at Christmas, Easter and birthday parties where food is prevalent and pointed to one example of the difficulty she had in sourcing safe cake mix to make Stanley's birthday cake for his first birthday.

She said that holidays are a 'nightmare' as they family have to take all the food Stanley needs and eating out is impossible and it is often difficult to know exactly what is in each meal.

She added: "Everything involves extreme planning, we can't be spontaneous."

She said: "When he first was diagnosed we were absolutely devastated."

Through meeting up with other parents with children with the condition at Birmingham Children's Hospital, Rebecca and her husband Matthew, were able to learn more about the condition and be supported.

She praised the staff at the hospital as 'invaluable' and she has since become an avid campaigner to raise awareness of the condition and better treatments.

Last week, the 37-year-old marched with the National Society for Phenylketonuria to the offices of Biomarin in central London to deliver a 15,000-strong signature calling on the company behind Kavan to lower the cost of the drug.

Awareness of the condition also received a boost last year when MPs James Morris and Ian Austin followed a PKU diet for a day, with both MPs saying how difficult it was.

The family even has to carry a small set of scale everywhere they go, as Stanley cannot eat more than six grams of protein a day.

Jessica added: "We have to work out what the amounts of protein in the food is, so we have to get a set of scales out."

Despite his dietary difficulties, Stanley enjoys life and loves dinosaurs and superheroes.

To find out more about the condition, visit the National Society for Phenylketonuria website.