The mother of twin girls who have a rare genetic condition is supporting a campaign for a drug that can treat it to be made cheaper.
Leanne Barnett’s twins, Olivia and Ruby, aged 21 months, were born with phenylketonuria or PKU.
The condition, which means they cannot eat large amounts of protein, affects about one in 10,000 UK babies.
Mrs Barnett says she has been quoted up to £75,000 per twin for a yearly Kuvan prescription.
A petition calling for the drug to be made cheaper and available on the NHS has gained over 16,500 signatures.
Mrs Barnett, from Kingswood, South Gloucestershire, said she had had to give up her job to make sure her daughters followed a strict diet, because people with PKU cannot process protein through the body properly.
“If they have too much protein their levels will go high, which can cause behavioural problems, and it can cause brain damage and mental disorders,” she said.
“Everything that they eat or drink, I have to check labels.
“I have to weigh [their food] to make sure they only have eight or nine grams of protein a day.”
The recommended daily amount of protein for a toddler is 13 grams.
The drug Kuvan helps people metabolise an amino acid found in some proteins, but is not available in the UK.
“I think we are the only country in the EU that doesn’t have it, because it’s too expensive,” said Ms Barnett.
She currently gets low-protein food for the twins on prescription from the NHS and bakes her own low-protein bread.
She has added her support to an online petition set up earlier this year asking for the US company that makes the “life-changing” drug to reduce its cost.
“It would make a massive, massive difference to our lives if we had it,” Ms Barnett added.