The toddler twins from South Gloucestershire at risk of brain damage if they eat protein

The parents of twin girls from South Gloucestershire who have a condition that prevents them from eating protein have backed calls for treatment to be made available on the NHS.

Leanne and Peter Barnett’s twins, Olivia and Ruby, were born with phenylketonuria (PKU) - a condition which means they cannot eat normal amounts of protein.

If the pair eat as much as an extra slice of bread, they risk suffering from a number of potentially life-threatening side-effects - including brain damage.

Mrs Barnett says she has been quoted more than £50,000 per twin for a year’s supply of Kuvan, the drug that she says would transform her childrens’ lives.

An online petition calling for Kuvan to be made cheaper and available on the NHS has gained over 17,500 signatures - including Mr and Mrs Barnett’s.

If Olivia and Ruby were to respond to the treatment, it would allow them to increase their daily protein intake.

What is PKU?

Phenylketonuria (PKU) is a rare but potentially serious inherited disorder.

Our bodies break down protein in foods like meat and fish into amino acids, which are the ‘building blocks’ of protein.

These amino acids are then used to make our own proteins. Any amino acids that aren't needed are broken down further and removed from the body.

People with PKU can't break down the amino acid phenylalanine, which then builds up in the blood and brain. This can lead to brain damage.

“The NHS does not offer a blank cheque”

In a statement, NHS England said Kuvan is not available because they do not offer a “blank cheque” to pharmaceutical companies.

Leanne and Peter are hosting a fundraising event for NSPKU, a charity which supports people living with PKU, at Cleeve Rugby Club on March 28, 2020.

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