Sarah Long, oldest survivor of Morquio syndrome, pleads for NHS to provide expensive drug to treat condition
Every day Sarah Long becomes weaker. She cannot sleep for more than an hour at a time, loses concentration and struggles to speak. “I don’t have much longer,” she says with a remarkable lack of self-pity. At 44, she is by far the oldest person to have Morquio syndrome, an extremely rare degenerative impairment, caused by missing enzymes, that has stopped her from growing since the age of six.
Most people with the syndrome die in their teens from a heart attack or because their lungs fail. Only 88 people in England – and 160 worldwide – are known to have the syndrome and barely a handful have made it into their 30s. Long has earned her surname. But, then, since she lost her mother when she was a teenager, she has been nothing if not strong-willed. She puts her longevity down to “bloodymindedness, a strong heart, determination – that was something my mum taught me”.
Not only did she go on to defy every medical prediction and reach her 40s, she took a degree in sociology, then a master’s, and is now in the middle of studying for a PhD. It was the same determination that in 2012 made her choose to test a free trial of a drug called Vimizim. She had spent eight months laid low with pneumonia, a period in which she says she “didn’t function”, and felt going on the trial was worth the gamble.
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Filed under: Disabilities, NHS, lifesaving drug, Morquio Syndrome, NHS