THE parents of a boy who survived after becoming dangerously ill at just six days old, are so grateful they want to organise a fundraising event for the charity which has helped them.

Harley Whitaker, who is now four months old, suffers from the rare genetic condition medium-chain acyl-CoA dehydrogenase deficiency (MCADD).

His mum and dad, Jasmine Elkington and her former partner Adam Whitaker, of Liskeard, are working together to come up with fundraising ideas to help the charity CLIMB (Children Living With Inherited Metabolic Diseases) which supports families of children with the disorder.

Only 60 children in the UK have been registered as suffering from MCADD which has only been tested for in Cornwall since 2009. Sufferers are born with a faulty or missing enzyme which breaks down fatty acids. If undetected and untreated it can lead to a coma, brain damage, liver failure and can be fatal.

Harley was born five and a half weeks premature in June, but Jasmine said he made a good start and was soon home with her other children, Summer and Tamir Mahmood.

'He started not taking his food properly,' said Jasmine. 'Because I'd already had two children I knew what to do and persevered with his feeding. But at six days old he woke up in the morning blue in the face and almost lifeless. I picked him up and phoned for an ambulance which arrived within minutes.

'The paramedics put Harley on resuscitation and rushed him to Derriford Hospital, but at that point I was already fearing the worst. He was taken straight to intensive care and put on to life support, with the ambulance crew still at his bedside. They were very upset and worried because he was so ill and tiny.'

However, miraculously Harley survived and tests revealed he had MCADD. After five weeks in hospital he was allowed home.

'He's our little miracle man,' said Jasmine. 'He's now a big bundle of joy and a very happy baby who smiles a lot. He is on a difficult diet and I set an alarm for every three hours day and night to make sure he is eating enough. He must never go for longer than six hours without being fed.'

Jasmine has researched Harley's illness so she and Adam fully understand it and give him the best care.

The charity CLIMB has helped them and now they want to support it.

'Adam and I are thinking of starting our fundraising in Harley's name, hopefully before Christmas, along the lines of an offroad fun run for children. We would be grateful for any advice on how to do this and some help,' said Jasmine. 'We are so grateful we have Harley and would like to help children like him who have MACDD.'

As an added incentive, Jasmine says that if Harley raises £1,000 within three years he will be able to plant a special tree, and £2,000 in three years will mean a star will be named after him.

For more information about CLIMB see http://www.climb.org.uk">www.climb.org.uk