ENJOYING a school dinner with friends is something many eight-year-olds take for granted.

But Usman Baker suffers from the rare, inherited, metabolic disease Phenylketonuria (or PKU), which means the wrong food could leave him brain damaged.

Birthdays parties, visits to restaurants and even an ice-cream at the beach are a food minefield for Usman.

But now, thanks to his school – and a hard-working dinner lady – Usman can sit down and enjoy school dinners, just like anyone else.

Usman, from Barton, Oxford, is a pupil at the estate’s Bayards Hill Primary School.

A keen dancer, cook and gardener, he looks just like any other healthy boy his age.

But at just five days old, his and his whole family’s life was turned upside down.

Mum Safia, 42, said: “They said it would be life-changing, that there was no cure for it and that he would have to have a strict diet for life, or risk brain damage.

“We were shattered. ”

Only one in 10,000 people have PKU, a disorder which arises from the absence of a single enzyme called phenylalanine hydroxylase.

This enzyme normally converts the essential amino acid, phenylalanine, to another amino acid, tyrosine.

But in people with PKU this does not happen and a build-up of phenylalanine, which is toxic to the central nervous system, can eventually lead to brain damage.

Depending on their degree of PKU, sufferers cannot eat meat, cheese, poultry, eggs and milk, plus many other foods such as bread, pasta, chocolate and many cereals.

Their diet is supplemented with artificial protein which allows normal growth and development.

As Usman has grown he has become accustomed to the constraints of PKU – his blood is tested weekly, he takes protein supplements twice a day, his mum weighs out the food he eats containing protein and she also bakes special bread, bread rolls, cakes and biscuits.

But there are still challenges. Mrs Baker said: “Sometimes Usman will go to party and it will be heartbreaking to see him, looking at the cakes and sweets and wishing he could eat them too. When it comes to his birthdays I follow a special recipe to make his cakes.

“It makes me sad that he will never be able to just go for a burger with his friends.”

From Monday to Thursday Usman takes a lunchbox to school.

But on Fridays he now lines up with the children who enjoy cooked lunches.

Mrs Baker said: “One of the dinner ladies, Jan Rowlinson, weighs Usman a portion of potatoes and vegetables. I then take up one of his burgers.

“It takes effort from everyone, but it is wonderful for Usman to feel just like the other children.”

‘I WISH I COULD EAT FISH AND EASTER EGGS’

USMAN has been taking a carefully-prepared packed lunch with him, everywhere, for most of his life.

Mrs Baker said: “We can’t just go for a day out or on holiday and stop for lunch somewhere. Even when we go on holiday I take a loaf of bread I have baked.

"My cupboards are covered with information and PKU guidelines, and the shopping takes hours as I have to study lots of ingredients, trying to find new things he can eat and checking the levels in foods he can eat – as they often fluctuate."

Usman said: “I feel sad and that it’s not fair that I have to eat different things from everyone else. I wish I could eat fish and Easter eggs and McDonald’s burgers, but I can’t.

“My favourite food is my ice cream, my jelly and my special biscuits and cakes that mum makes.


“My mum is spectacular. I love helping her cook and eating the left-over gooey stuff. It makes me feel special.”