Katy Brown's letter to John Bercow in full

Dear Mr Bercow,

My son Sam is six. He has Morquio Syndrome, which causes shortness in stature, progressive physical disability and early death.

There is no cure.

Sam is a little boy full of fun and life who has no idea about the silent path this disease has set for his future.

For three years he has given his young life to medical research, taking part in a clinical trial for the first ever treatment for Morquio called Vimizim.

You see Morquio Syndrome is one of those conditions with an irritatingly long name.

It’s a good job our MP Greg Mulholland didn’t use its other name – Mucopolysaccharidosis Type IVa.

He might have been stopped much sooner. It is one of the conditions that Mr Mulholland was passionately referring to in a question to the House that you so rudely and abruptly stopped.

When you stopped Mr Mulholland, it demonstrated in an instant everything that is wrong with British politics.

You wielded your power, the House guffawed and jeered, you used derogatory, mocking language.

But here’s the blunt truth behind that stopped question. For eight months Mr Mulholland has fought valiantly to represent my family and my son.

He has stood up against deep injustice and worked tirelessly to get answers and a solution, all whilst health ministers have done nothing.

He was standing up for what is right, unlike many others. Two weeks ago Sam lost access to Vimizim, the drug that has given him back his childhood.

Why? Because of gross incompetence and deep institutional failings at NHS England.

And because of the repeated failures of health ministers to hold it to account.

On Thursday, July 2, NHS England neatly played a get-out-of-jail-free card. They decided after 14 months of deliberating and three changes in decision date to not make a decision on funding the drug at all… and passed the buck to the National Institute for Health and Care Excellence .

Nice, who have no expertise in ultra rare diseases and who are frantically trying to figure out how to deal with these complex conditions that they don’t understand.

This means that even in the event of a positive decision, Sam is likely to remain untreated for a further 6-9 months, with likely irreversible consequences.

And a positive decision is sadly an uphill struggle as Nice has drawn seriously flawed conclusions and not involved the right expert clinicians thus far.

I’ve heard far too many excuses, seen far too many meaningless letters, and been fed far too many broken promises. Not least from David Cameron himself.

It is abhorrent and entirely unacceptable. When you stopped that question on Tuesday, you not only took away Mr Mulholland’s voice, you took away my son Sam’s too.

A little boy with life and the system stacked against him.

You also took away a little piece of me, because despite what I’ve experienced in the past eight months, I’ve always grasped on to the hope that a little humanity remains at the heart of our political system.

I hope you accept now that this indeed was an urgent question, and one that David Cameron and Jeremy Hunt personally should be held to account to properly answer.

Yours, Katy Brown