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Otley school mates to find out more about Sam's fight against disease
8:00am Tuesday 20th May 2014 in Local news
Pupils in Otley found out more about an extremely rare genetic condition affecting one of their classmates.
Sam Brown was diagnosed with Morquio Syndrome, a life-limiting, genetically inherited disease, in 2009 when he was 16 months old.
Now five and a Year 1 pupil at The Whartons Primary School, Sam has been taking part in a clinical drug trial for the past two years, with some encouraging results.
On Friday, The Whartons staged a fun, fundraising event to support the MPS Society – Sam’s condition is a type of MPS or mucopolysaccharidosis – and explain its work.
Sam’s mother, Katy, said: “Thursday, May 15, is MPS Awareness Day this year and MPS diseases are so rare barely anyone has ever heard of them. Raising awareness is therefore absolutely critical. Because Sam is in hospital on a Thursday, his school organised this event for Friday.
“The children were invited to come to school wearing wild and wacky odd socks, a fun way of raising some money for the MPS Society, the only national charity in the UK that supports children and families impacted by MPS."
Only 105 people across the the UK are living with Morquio Syndrome, which causes shortness in stature and progressive physical disability.
Although there is no cure, Sam’s family have been given real hope by the results of the clinical trial.
Katy said: “The treatment involves a weekly drug infusion at Royal Manchester Children’s Hospital. So every Thursday Sam misses a day of school to travel to Manchester. This is a huge family commitment but we are absolutely confident it is the right thing to do.
“In recent walk tests Sam performed better than an unaffected child of similar stature and has grown a little too, all of which are positive signs that the treatment is having a really fantastic impact.
“The treatment drug he has been receiving, Vimizim, has just received marketing approval in the EU and this brings true, positive hope that there is a better future for children suffering from Morquio Syndrome – that we can re-write the rule book for Morquio.”
More details about the condition can be found at mpssociety.org.uk, where donations can be made online or by texting MPSS01 £2/£5/£10 to 70070.