Published On: Wed, Sep 4th, 2019

New hope for vital drug as severely ill and BRAVE eight-year-old is desperate for help | UK | News

​Elliott, of Thornton, Leics, has developed a phobia of needles and even caught swine flu over Christmas while on a ward.​ ​But now he is back in hospital with another dangerous fungal mould lung infection called aspergillosis – all because he has no access to Orkambi.​ ​Worried mother April told us her tearful boy is full of “rage and sadness” at being in and out of hospital throughout his summer holidays. She said: “Elliott has a lot of different fungus in his lungs, which are airborne and just in the environment.

“His body is also allergic to the aspergillosis fungus which causes a lot of further issues and damages his lungs. Since the end of June, he has been in hospital for a total of five weeks and still has another week to go.​

​“It’s been quite tough with the IV antibiotics not really helping, so he’s had IV steroids and now he’s had IV anti-fungals. We planned for him to go into school for a couple of hours this week to see his friends as he hasn’t seen most of them since June.​

​“But then blood tests came back and they had to put up emergency fluids to protect his liver from damage.

“He was heartbroken and cried his eyes out.”​

​Since the age of four, Elliott has had a direct “port-a-cath” tube inserted in a chest vein, to immediately receive intravenous antibiotics.​

April’s, husband Stefan, 49, and their daughter Kathryn, 12, have to make constant sacrifices.​

​Sudden ill-health or infections mean they have had to cancel holidays at the last minute, despite Elliott working hard on his physio and treatments.​

April added: “This morning, they told us worse news, that the anti-fungal drug is damaging his kidneys, so they are stopping it and he needs his kidneys flushed.​

“Elliott is so brave but feeling very down as he’s now hooked up to fluids so can’t nip out for a visit to his school.”​ 

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