The family of Otley Morquio sufferer Sam Brown, six, say they hope more people now understand his plight after his story was inadvertently thrust into the national spotlight after a row in the House of Commons.
As reported in the YEP last week, Sam’s Leeds North West MP Greg Mulholland was silenced by Speaker John Bercow for “taking too long” in Parliament when raising the issue of Sam and other Morquio sufferers losing access to pioneering drug Vimizim. Sam’s mother Katy Brown went on to write a heartfelt letter to Mr Bercow in which she said “When you stopped that question, you not only took away Mr Mulholland’s voice, you took away my son Sam’s too.”
The story was picked up by national papers and yesterday Katy told the Yorkshire Evening Post: “The negative thing in the Commons has had a positive impact on campaign as it’s allowed us to tell Sam’s story to more people, and to understand why [Mr Mulholland’s] question was so important. It’s given us the opportunity to talk about the injustice and failings and the fact that treatment has stopped for Sam and other sufferers.” It has also boosted publicity for a crowdfunding campaign set up by the MPS Society to try and raise the £4m needed to fund Vimizim for four months.
The fundraising drive was organised in desperation after NHS England last week announced it was delaying its funding decision until the autumn - leaving Morquio patients like Sam, and Angela Paton, 41, of Kippax, facing an uncertain future with potentially irreversible consequences.
Katy said the £4m target is “no mean feat” but added: “Four million people donating just £1 would make this possible. This would send an incredibly strong message about the impacts of bureaucracy and delay on children like Sam.”
To donate visit www.crowdfunder.co.uk/stop-rare-being-unfair-fund-the-gap.