An Otley family’s fight for life-changing treatment is getting support from a Harrogate bus company.
6-year-old Sam Brown was born with a rare disease called Morquio Syndrome which affects his growth and physical abilities.
Sam has been taking a drug called Vimizim as part of a trial, but the Government’s clinical watchdog, NICE, has indicated that it’s unlikely to recommend funding on the NHS because of the cost.
After being inspired by the youngster’s story, Transdev has named one of its buses after him to highlight the campaign.
Mum Katy said:
It’s been an incredibly long battle and unfortunately we’re still not there. He’s been without treatment now for four weeks and we’re still campaigning as hard as we can to get the NHS to fund this vital treatment.
He did a walk test at the hospital which showed that the distance he could cover has dropped off in the past four weeks. It’s not going to be like flicking a switch, but we’re obviously really concerned that there’s going to be irreparable damage done from him not having this treatment.
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, and therefore to have a company like Transdev supporting us and helping us put it out there is just amazing.
Alex Hornby, Managing Director of Transdev in Harrogate, said:
There’s nothing better than a bus seen everywhere all over the town to spread the message. 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 we had to.
We’re very much part of what goes on in Harrogate and you can’t get anything more a people business than buses, with the amount of people that we employ and the amount of people we carry around the town and how visible we are in the town. It just makes so much sense that we do things like this and we’re both proud and humbled to be associated with Katy and Sam.
