"You took away my son's voice" heartbroken Katy tells John Bercow MP

Katy Brown, from Leeds, has been campaigning throughout the year for NHS England to fund the drug "Vimizin" for her six-year-old son Sam and others with the rare disease, Morquio Syndrome. It's been fourteen months since the drug was licenced by the European Medical Agency and yet no decision has been made about whether it will be available on the NHS in England.

In January she took her campaign to No. 10 hoping that the Prime Minister would intervene but despite David Cameron later telling ITV Calendar that he expected a decision by the end of April, it took until the beginning of July for the Brown family to be told that NHS England would not be making a decision for another sixteen weeks.

As a result, her MP, Greg Mulholland tried to push the issue in the Commons last week, but after speaking for less than twenty-five seconds, was told by the Speaker of the House of Commons that he was being 'discourteous' to the House by being 'long-winded'. You can see his full response to Greg Mulholland in the video below.

After Greg Mulholland had exited the Chamber, John Bercow later told the House:

The MP for Leeds North West, Greg Mulholland, described the snub as a failure of Parliamentary democracy and Katy Brown has written a heartbreaking letter, which you can read in full here, in which she says the Speaker not only took away Mr Mulholland's voice, but six-year-old Sam's too, and 'a little piece of me'.

Meanwhile, as Sam is now without the drug and his condition continues to deteriorate, his family are continuing with their campaign and there is a crowdfunding campaign to try and raise money to pay for the drug for all sufferers of Morquio Syndrome.