Matty Jones has an extremely rare and life-threatening condition - Dense Deposit Disease (DDD) which is slowly eating away at his kidneys.
Eculizumab - the £360,000 a year drug which could help him is available on the NHS for other conditions but there is currently no policy for using it to treat DDD.
His parents Nick and Karen are asking the NHS to change its policy to allow funding for this drug which could save Matty’s life.
Nick said: ‘‘Matthew needs this treatment now. By the time they make policy and get it through it will be too late for him. We need the government to act now and provide a path to treatment. They need to make this happen now.’
Karen added: ‘It is so frustrating, it doesn’t make sense. When there is something out there that could keep his kidney functioning but they can’t just give it to us now’.
Together with Matty, his sister Sophie and their MP Chris Matheson they delivered their 374,000 petition to Prime Minister David Cameron hoping he will help pressure the NHS to reconsider its position.
MP Chris Matheson said: ‘The whole of Chester is behind him, 370,000 people are behind him.
‘He can either get this treatment now or suffer through years and years of a worse health and worse treatment. It’s absurd, there is only one sensible solution.’