JOY FOR CAMPAIGNER WHO PLEADED WITH PM

A PKU sufferer can finally access Kuvan after her pleas in the Daily Express to the Prime Minister helped secure the landmark deal.

Lily Wood, 20, wrote and spoke to Boris Johnson and health ministers many times, asking them to prioritise the drug.

In June, after hearing Nice planned to only let under18s use it, she wrote again to the PM in our paper and weeks later the maximum age was lifted to 21.

Lily, left, of West Drayton in Middlesex, told us: “I can’t believe it – it has been such a long fight for me but far longer for others. I cried when we heard the news, tears of happiness but it’s bittersweet as so many sufferers are missing out.

“Living with PKU is so much harder than anyone can realise – it’s not just a case of enduring a tough diet. It dominates your life.”

Parents Chris, 57, and Hayley Wood, 45, were shocked when Lily was born with PKU as they had never heard of the disorder.

Forced to stick to prescribed bread with fruit or vegetables, Lily can only eat the protein equivalent of half a chicken nugget a day and must carefully weigh every snack.