P AT I E N T S T O RY
How Ben continues to defy all odds Through two undiagnosed life-threatening illnesses, Ben has been left with life-long physical and cognitive consequences and relies on the full-time care of his parents. But from such trauma has come hope, with the ten-year-old continuing to amaze medics with his progress. NR Times meets the inspirational family
After almost losing his life twice, and living with the consequences of a double leg amputation and significant brain damage, ten-year-old Ben has been through more than most in his short life. But despite the huge trauma that has faced he and his loving parents, Sally and Dan, they are all looking to the future with renewed confidence. Having come close to death through meningitis as a baby, and then again after sustaining significant cognitive and functional damage through a cardiac arrest - which medics were so certain he would not survive, they allowed him to return home for palliative care - six years later, Ben is now thriving with the support of his therapy team. With regular visits to his physiotherapist and occupational therapist, he is making strong progress, and is even looking towards being fitted with ‘stumpie’ prosthetics to allow him to stand. Despite the fact that the profound brain damage and physical impact has left Ben severely disabled, with a reduced life expectancy and the likelihood he will never have mental capacity, the family continue to find the positives in every day - and particularly in how Ben continues to defy all expectations.
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The outlook now could not be more different to those few short years ago, when Sally and Dan were twice warned their beloved son may not make it. “This is the happiest we’ve been in years, Ben is doing so well, it’s amazing how far he’s come,” reflects Sally. “He’s now just happily doing his thing, he is totally the boss in our house, we wouldn’t have it any other way. “But it’s been a long road, looking back on it. At the time, you just get through it because you have to, but recently I was looking through some of the things I’d kept from when he was in hospital and honestly don’t know how we did it. “On reflection, it was the most horrific thing anyone could imagine, and some of the things we saw and had to experience were things no parent should go through.” And for the family, the trauma of what happened to their son is made all the more horrific by the fact on both occasions, medics failed to realise the gravity of Ben’s illnesses until it was too late. With meningitis, in 2012, Ben was sent home from his local hospital with a supposed ‘viral infection’, despite the beginnings of a rash
beginning to develop - only hours later, he was rushed back to hospital, and transferred to Great Ormond Street due to the gravity of his situation. He spent three weeks in intensive care, and more than three months in the specialist centre in total, where Ben - only eight-and-a-half months old - underwent the amputation of his right leg above the knee, his left leg below the knee and part of his right hand. “I’ll never forget that image of him after we took him back in, having known something was wrong all along. He was lying there, he was huge through being pumped with water, his skin was black. It was like a nightmare. I’ll never, ever forget it, and we’ll never get over it,” says Sally. But while Ben’s outlook was initially bleak, his recovery stunned medics. After discharge and once he settled at home, he began to progress with crawling and talking, and began attending school. Cruelly, it was just as the opportunity came to be fitted with prosthetics that tragedy again struck the family in April 2016, when Ben began to be affected by a number of problems, from sickness to lethargy, none of which were
