A SIX-YEAR-OLD Otley boy with an ultra-rare disease now has his very 'own' bus.

Transport company Transdev has named one of its fleet of vehicles in Harrogate Sam Brown, in honour of The Whartons Primary School pupil.

Sam has Morquio Syndrome, a condition that severely limits mobility and growth.

His parents, Katy and Simon, have been campaigning tirelessly to persuade NHS England to fund the treatment of Vimizim, a drug that has been helping their son for the past three years.

Katy's efforts saw her named Parent of the Year in the recent Stray FM Local Hero Awards, which were sponsored by the travel company. She was told that meant Sam's campaign would be publicised on the back of a bus.

What the Browns didn't find out until last Thursday, however, was the vehicle in question would also actually be named after their son.

Announcing their delight via the Keep Sam Smiling Facebook page, Katy said: "Sam now has his own bus!

"Anyone in or around Harrogate, please look out for it!"

She added: "Particularly with rare diseases, it's very hard to get a voice because nobody has ever heard of the disease and nobody really understands it.

"Therefore, to have a company like Transdev supporting us and helping us put it out there is just amazing."

Paul Hodgson, of Transdev Harrogate, said: "Sam's campaign really touched us so we thought it would be a nice surprise to help highlight the story.

"It's such an important campaign, so anything we can do to help in a small way or a big way, we felt we wanted to and had to."

The Browns, along with other families affected by Morquio, have been waiting since last December for a decision about whether or not Vimizim will be funded.

Their campaign, supported by MP Greg Mulholland (Lib Dem, Leeds North West), has seen them make a number of trips to London to keep the pressure up on NHS England and the Government.

Sam's supply of Vimizim as part of a clinical trial finally ran out in June.

The trial had been extended by several months by the drug's producer, Biomarin, in a bid to make it last until a much-delayed decision came from the health authorities.

But on July 2 NHS England, instead of making a ruling, announced it would be waiting to back whatever conclusion NICE (National Institute for Health and Care Excellence) came to... a decision not expected until October.

For the Browns, meanwhile, the fear is every day Sam has to do without the drug may lead to an irreversible deterioration.

The MPS Society is running a £4 million crowdfunding campaign to provide Vimizim to Morquio sufferers for four months. Donations can be made at the https://www.crowdfunder.co.uk/stop-rare-being-unfair-fund-the-gap web page.