Next steps in fight to help Charlie live

CHARLIE is in a stable condition and not believed to be in any pain, according to his parents.

He is currently being kept alive with a ventilator because his lungs are too weak to breathe unaided, and he has a nasal tube for food and water.

With doctors in the UK saying there is no hope, his parents believe his only chance lies in the US, where groundbreaking research might help him.

They are pinning their hopes on an American doctor who is testing a new treatment called nucleoside bypass therapy. The idea would be to give Charlie compounds called deoxynucleosides, which healthy people produce normally, to repair his damaged DNA.

But before Charlie can try the treatment, his parents need to convince the High Court it has a chance of working. Yesterday they took the first step by requesting all of Charlie’s medical notes from the NHS. Great Ormond Street Hospital, where he is being treated, has agreed to hand them over.

These will be studied by the family’s lawyers, and also sent to the US hospital, where doctors will assess his condition and write a statement explaining how they hope to treat him. The parents say the US medics are positive, and are hopeful the statement will help convince the court to give Charlie a chance.

On April 3, a judge will hear arguments from both the parents and Great Ormond Street. Unless it changes its stance, the hospital will say its doctors do not believe nucleoside treatment will work for Charlie. Then a judge will decide whether to grant or refuse Great Ormond Street’s application to withdraw his life-support.

Even if this is refused, the parents face a further hurdle – the £1.2million cost of transporting Charlie across the Atlantic and funding the treatment. His condition means he will need a private plane with intensive care facilities and staff.