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Phenylketonuria, or PKU, forces sufferers to live on a severely-restricted diet, as too much protein can cause brain damage. Life-changing drug Kuvan, created by US firm BioMarin, has been
approved for use but is not available on the NHS. However, after this paper launched its "Supply Kuvan On the NHS" campaign in February, plans have been revealed to consider
funding the miracle drug. NHS England (NHSE) has released a draft proposal that Kuvan be "considered for routine commissioning" with a decision to be made next month. If approved
the drug could help 600 sufferers lead a normal life. Campaigner Kate Learoyd, 46 - mother of PKU-sufferer Alex, 11 - said the news was a massive step for sufferers. Kate, of Holt,
Wiltshire, said: "The support of the Daily Express has meant a huge amount to us. "It has felt like our voices are heard at last. News that NHSE is considering funding Kuvan for
people with PKU is a ray of hope for us. "This drug is already available across Europe but in Britain PKU families have had to manage without. I worry about how many people with PKU are
coping at the moment. "Kuvan could allow people the chance to have a healthy life." It is a major boost during the coronavirus pandemic as PKU sufferers are not classed as
"extremely vulnerable" so cannot access supermarket priority slots. Professor Anita MacDonald, dietitian at Birmingham Children's Hospital, said: "Children with PKU
cannot eat 80 percent of normal foods. They can eat fruit and vegetables and a limited range of branded frozen and tinned foods. The last few weeks have been very challenging. "Some
families have had difficulty in accessing appropriate food in shops to ensure the correct dietary treatment can be given. Families self-isolating have struggled." Last month the Daily
Express backed a petition hoping to gain 100,000 signatures to force a Parliamentary debate on the PKU drugs crisis. _To sign the PKU/Kuvan crisis petition, visit
https://petition.parliament.uk/petitions/300034_ HAVING SON WITH CONDITION IS LIKE LIVING ON KNIFE EDGE The mum of a four-year-old PKU sufferer has told how he will steal food because he
hates his vile-tasting protein supplements. Timmie-Joe Watkinson has such an extreme form of the illness that all his food has to be prescribed by a GP. The boy could suffer brain damage if
he eats anything else. Mum Sammy, who has four other children, said: "I have to be constantly alert. It is like living on a knife edge, knowing that Timmie-Joe could become very ill. He
does try to steal food sometimes, especially crisps, as he says his food tastes so horrible. And if he sees my other children have crisps, he'll be there screaming. The impact on the
family is quite severe. It is not like living normally." If Timmie-Joe, of Diss, Norfolk, had Kuvan, he would be able to ingest more protein and eat more normal foods. Sammy, 41, said:
"Now the Daily Express is involved, hopefully things will get moving."