A BABY with a life-threatening genetic disorder has new hope after being given a ￡1.8million dose of the world’s most expensive drug.

       Harry Hughes is now playing with his toys for the first time having had a one-off gene -therapy called Zolgensma.

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       Harry Hughes was born with a life-threatening genetic disorder that causes respiratory issues, paralysis, muscle weakness and progressive loss of movement 3

       Harry and his parents Katie and Darren have now been given hope thanks to the world’s most expensive drug

       Parents Katie, 33, and Darren, 36, have told how the wonder drug is given as a one-hour intravenous infusion.

       Eight-month-old Harry has spinal muscular atrophy, a rare condition that causes respiratory issues, paralysis, muscle weakness and progressive loss of movement.

       He received the groundbreaking treatment in November at Bristol Royal Hospital for Children.

       Katie, of New Milton, Hants, said: “There’s been so much improvement in just eight weeks.

       “Harry struggles with anti-gravity movements and can’t yet lift or hold his head but he can now lift his arms. He can even touch and grab his toys, which is amazing.

       “He can also move his neck from side to side with minimal support which he was unable to do and is even making efforts to speak.”

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       Zolgensma, developed in the US, replaces the gene SMN1 which -children like Harry are missing.

       It was made available for NHS use in England last year.

       Harry was born after his parents had three rounds of IVF treatment.

       Katie said: “We still have a very long road ahead with a lot of unknowns and complications but we’re happy that there is a hopeful future in front of us.”

       NHS OK for lung tumours lifesaver

       By Sam Blanchard

       LUNG cancer patients are to get a cutting-edge drug that cuts the risk of tumours growing back by a third.

       Hundreds of people a year will be eligible for atezolizumab, which boosts the immune system to tackle cancer.

       England’s Medicines and Healthcare products Regulatory Agency has become only the second watchdog in Europe to approve it for non-small-cell lung cancer patients.

       NHS chief Amanda Pritchard said: “Patients now have a very exciting new treatment.”

       Prof Charles Swanton, at Cancer Research UK, said the approval was a major step forward.

       About 41,000 people get non-small-cell lung cancers in England every year — 90 per cent of all lung cancer cases.

       The drug, given by IV drip, will be offered to those who have already had surgery and chemo.

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       Harry received the groundbreaking treatment in November at Bristol Royal Hospital for Children