While most of us were tucking into the turkey and stuffing thisChristmas, one family from Wirral were stuck in hospital, like they have been for most of their son's life.3 year old George Johnson cannot eat or drink, he rarely sleeps morethan 20 minutes at a time and is fed through a line straight to his heart. Doctors know his stomach and his bowel don't work. What they don't know is why, or how to cure him.
When I first met George last summer, the first thing that struck mewas that he actually looked like any 'normal' little boy. He wasn'temaciated as I was expecting, and he had the most amazing smile. But look closer and you then notice his little backpack which hehas to carry around with him everywhere. It contains his feeds anddrip providing him with essential nutrients- literally keeping him alive.
It's hard to imagine just how difficult the last few years have been, not only for little George, but for his entire family. Having to endure constant excruciating spasms any time he tries to eat just a tiny bite of a grape or drink some water. For his parents to watch helplessly as he writhed around in pain must have been heartbreaking. But even more upsetting, the realisation that no-one knew what wascausing this, or more importantly how to cure it. The doctors at Great Ormond Street Hospital have called it 'the George Syndrome'.Even they, the best medical brains in the UK, are baffled as to whatis wrong with him. And so for George and his family, the consequence has been thatthey've spent much of his short life in hospital. The emotional and financial strain has been immense.
As I saw for myself, they are living in a tiny hospital room and trying to juggle work and school for his sister while being there for George. But they've not given up.Setting up their own campaign page on twitter and facebook called Team George, they've gained thousands of followers; their aim, not only to raise money, but also awareness, in the hope that someone, somewhere, may beable to help them find a diagnosis and therefore a cure.George's family believe those answers may now lie in America. They're now fundraising to get him there.But as they do so, they now also have to come to terms with the devastating news that George's 4 year old sister Eva may also have thesame condition. Although she's been well for the first few years of herlife, 12 months ago, she too began developing similar symptoms. Eva isnow also having tests at Great Ormond Street Hospital: her future nowequally uncertain. Yet despite such depressing circumstances, this is a family who, it's clear, are not and will not give up.
In the face of such adversity, Emma and Neil Johnson are determined to exhaust every possible avenue to free their children from pain. It is a determination that's not only admirable but inspiring.
For more information go to Team George's facebook page