Otley Boy Takes His Plea for Treatment to Downing Street
A six-year-old boy from Otley with a rare and incurable condition is taking his fight for treatment to Downing Street.
Sam Brown has Morquio Syndrome, which affects the way his skeleton grows.
He’s been taking the drug Vimizin as part of a clinical trial, and NHS England was due to rule on whether to fund it last month.
But the ruling was delayed after a legal challenge over its decision-making process.
Now the family are travelling to Downing Street to hand in posters and letters which Sam’s classmates helped him to make.
“It’s a really positive thing for him but at the same time it’s all very overwhelming as well,” says Sam’s mum Katie.
“It’s a lot for him to take on and to understand. It’s very tiring, which makes me cross that we have to do this because we’re putting him through an awful lot.”
Sam’s condition means he has an average life expectancy of just 25 years, but the drug he’s been taking has helped him grow taller and more independent.
“He wanted to talk personally to the Prime Minister about it,” Katie says.
“So we’re really hoping that we get the opportunity for Sam to get that meeting face to face with David Cameron.”
Last week, Sam sent a letter to Mr Cameron explaining his situation.
“Mummy and daddy have told me that you don’t have much money to pay for my medicine,” he wrote. “It helps me get bigger and stronger.”
The ‘Keep Sam Smiling’ campaign has been backed by local MP Greg Mulholland, who has been pushing the issue in Parliament.
“I will be pushing ministers to treat this issue with the urgency that is needed,” he said. “Children's lives are at stake here, any delay in guaranteeing drug access could cause deterioration of their conditions, and this would be irreversible.
"We need to know by the end of January and any delay is not acceptable."
Katie says the support has been incredible: “I’ve had some amazing letters from other Morquio sufferers and people with different rare diseases who are struggling to find a voice.
“It’s really bringing people together in a very positive way.”
A spokesperson from NHS England in Yorkshire said: “We sympathise with any patient and family who await a decision on the authorisation of a drug or treatment and appreciate what a difficult time this must be.”
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