A TERRIFIED couple from Brentwood are desperately trying to raise £7,000 to pay for a potentially live-saving trip to America for their little boy, who hasn't even turned two yet.
Last Boxing Day, the lives of the Harrington-Ellis family were turned upside, when their youngest son, Sky, was rushed to Great Ormond Street Hospital (GOSH). Within two days he was having a tumour removed from his brain.
Just a few weeks before the festive season began, Paul and Marie Harrington-Ellis had become increasingly concerned about the behaviour of Sky, who is now 23 months old.
He was uncharacteristically being sick after food and his ability to move was deteriorating – up until then he had been a busy, playful and active baby.
Several trips to the doctor led to no meaningful diagnosis and the tot's problems continued, according to 34-year-old Marie, a former primary school teacher, who explained how Sky stopped walking whilst supporting himself, and crawling.
"He woke up one morning, he was in his pram with his head turned to one side and he just didn't look right," she said.
"And on Christmas Day he was just terrible, he had an absolutely awful day."
The following day the couple, who live near to Brentwood town centre, whisked their son off to Queen's Hospital refusing to accept there wasn't a problem.
"We'd had enough in the end of being told there was nothing wrong," Marie said.
"By then we were in distress, we knew something was wrong."
Paul, 40, added: "We saw the paediatrician registrar next and we realised then, very quickly, that something was badly wrong.
"By 8pm that evening we were in Great Ormond Street Hospital".
Little Sky, who was completely healthy when he was born in November 2010, had a tumour on his brain.
On December 28, during a gruelling nine-hour operation, the youngster survived the first of many life-threatening procedures, fluid was drained from within his skull and the tumour removed.
And, although even a benign brain tumour can be lethal, one dreadful week's wait for the Harrington-Ellis' came to an end with the worst possible news.
Their son had cancer: Grade 3 Anaplastic Ependymoma.
Marie breaks down as she remembers the horrific moment she was told.
"I said to them: 'Is it cancer?' and they said: 'Yes it is' and that's when I just starting crying."
She added: "I didn't really know anything about tumours. The doctor says there is a lesion on the brain and it just seemed like they were talking about someone else at the time, not my son.
"You just don't think it's possible – why would a child have cancer? Why would he get this?"
Since the diagnosis, Sky has had to endure 20 fortnightly chemotherapy sessions at GOSH between January and July and has undergone around 30 blood and platelet transfusions.
He has also had a Hickman Line fitted to allow chemotherapy to be administered straight into his body and a Percutaneous Endoscopic Gastrostomy tube for direct feeding.
Baby Sky has been quarantined in a Queen's Hospital room on eight occasions since chemo began, usually for five days at a time.
Paul explained how one of the toughest situations was explaining to their eldest son, Ocean, 5, what was happening to his little brother.
"We have to be strong, we have got Ocean to take care of as well," he said.
"I was at my mum and dad's house, and we started telling him and kids just ask the big questions, like 'when will he be home? 'Will he be alright?' and there is no answer to any of these things.
"Everything is just 'next stage' in what you are doing, it's the only way you can cope with things."
At Easter, Paul lost his father, Richard Harrison, 60, to cancer. He had been diagnosed just a few months earlier.
Until now, doctors have avoided using radiotherapy to treat Sky, but with part of the tumour too risky to remove and the chemotherapy failing, a decision has been forced.
Radiotherapy can cause long-term damage to young people, but it is hoped the more precise proton therapy, not yet available in the UK, will work.
Marie said: "It's the most awful thing when I put him to bed at night and it's quiet and dark, you really think about it, but if you think about it too much it is just unbearable.
"He is still here, he is still happy and we have not lost him yet. But If it keeps on coming back and coming back then the hospital could say there is nothing more we can do for you.
"If it does keep growing back then to be honest, it's not looking good."
Although the NHS will fund the treatment, the couple are hoping to raise £10,000 to cover the cost of staying in the States and paying their bills in Brentwood.
Sky will undergo six to eight weeks of proton treatment, in Jacksonville, Florida, and afterwards Paul and Marie are hoping, if they raise enough money, to take their son to Disney World for a treat.
He loves Mickey Mouse and has been unable to have any childhood fun because of his sickness and quarantined condition.
Friends are rallying around to organised a series of events, and so far the fundraising total stands at £4,440.
Paul said: "All the money that has been raised so far, it has been because of our friends and it just shows how much people care and that's the nicest thing to come out of this."
