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Six-year-old Sam protests over drug funding at Westminster

People with ultra rare genetic diseases have protested at Westminster in their continuing campaign to try and persuade the health service to keep funding a drug which could change their lives.

They include six-year-old Sam Brown, from Otley, who has Morquio Syndrome.

It is a rare condition that means his skeleton does not grow properly, but his internal organs do.

Sam has been receiving a drug called Vimizin that helps him live a normal life.

It is expensive but it had been provided free by the drug company which produces it.

However, that deal is coming to an end.

Jon Hill reports:

Campaign for brave Sam's drugs returns to Westminster

Leeds MP Greg Mulholland will lead campaigners later today in a protest outside Parliament to step up the pressure on NHS England to fund much-needed drugs for people with ultra-rare diseases.

Sam Brown Credit: ITV Yorkshire

He has taken up the case of six-year-old Sam Brown from Otley who suffers from the rare genetic disease Morquio Syndrome, but has been told his drug, previously provided for free by the drug company, will not be supplied beyond May 12.

Greg Mulholland MP Credit: ITV Yorkshire

"These families and charities have had enough of being let down and fobbed off over the failure to approve funding for the life changing drugs these children need.

"They are we are consistently getting no real responses from NHS England or from Ministers, all of whom are hiding behind the ongoing consultation for a new system and even then, it is not clear when funding could be approved for the three drugs these children need and how long this will take.

“It was NHS England’s who had to scrap their process in December due to it being flawed and discriminatory, so the moral as well as legal responsibility is on them and the Department for Health to put in place interim funding now to pay for these until a they can establish a new, fit for purpose system for approving drugs longer term, that should have been there in the first place.

"So the Prime Minister must now personally intervene and with less than three weeks before Parliament dissolves, we need a decision on interim funding before then.

"People including children will soon lose access to the drugs they need and their conditions will deteriorate irreversibly as result and for that to happen due to a lack of leadership and accountability is appalling so we need an announcement on interim funding for these drugs now".

– Greg Mullholland MP

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Hundreds say final farewell to Otley's "hero" cyclist

The family and friends they described as 'a hero' in the cycling community have said their final goodbyes.

Craig Armitage

Craig Armitage died after his bike collided with a car during an event in North Yorkshire. A few days later, those he rode alongside paid tribute in a mass cycle through Otley.

He was looking forward to what he was going to be doing with his cycling - teaching kids, coaching them.

I remember speaking to him just before he left that day, he was so passionate.

– Gary Hudson

The father-of-three regularly raised money for charity by long-distance rides. Since his death, friends have raised more than £16,000 to support his family.

Hundreds turned out in Craig's home town to pay their respects at his funeral:

Funeral to take place for Otley cyclist

The funeral takes place today of a cycling coach from Otley who died in a road accident last month.

Craig Armitage was taking part in a cycling event when he was in collision with a car near Bolton Abbey.

Hundreds turned out for a bike ride in his memory a week later. His private funeral takes place at Otley Parish Church later today.

Funding for 6-year-old's life-altering drug to end

A 6-year-old with a rare genetic condition has been told he will only receive the drug he relies for another 10 weeks.

Sam Brown from Otley has Morquoi Syndrome Credit: ITV

Sam Brown from Otley has Morquoi Syndrome which means his skeleton doesn't grow properly, but his internal organs do.

He's been receiving a drug called Vimizin for free from the company which produces it as a goodwill gesture. But it says it'll stop providing the drug from May.

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Wife of cyclist killed in road collision says he 'always had a smile on his face'

The wife of a cycling coach killed in a road collision has paid tribute to her husband, saying he 'always had a smile on his face.'

Craig Armitage, aged 44, was taking part in the Otley Reliability Ride to Kettlewell last Sunday when he was killed.

Hundreds of people turned out for a memorial bike ride in Otley in his honour yesterday (Sunday February 22, 2015).

Jill Armitage said she hoped her husband's legacy would continue within the cycling community he was such an integral part of.

Friends of cyclist killed in accident urge people not to be put off

The family and friends of a popular cyclist killed when his bike collided with a car have urged people not to be put off cycling.

Yesterday hundreds of family and friends turned out for a ride in Craig Armitage's memory.

He ran coaching sessions with his business partner Jonny Farnaby on Otley Chevin.

They had planned to give free sessions to inspire children ahead of the Tour de Yorkshire.

He was killed last Sunday near Bolton Abbey - but Jonny told Calendar that Craig would not have wanted people to be put off cycling:

Widow thanks community in mourning

Hundreds of cyclists have turned out today to ride in memory of a popular father-of-three who was killed in a cycling accident a week ago near Bolton Abbey. Craig Armitage ran cycle coaching classes for children in Otley and was well known in the area. In her report Helen Steel talks to his mother Joan and friends Jonny Farnaby and Tristan Emptage but it starts with the words of his widow Jill.

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