‘Stopping my lifesaving drug will be my end,’ says woman with rare illness

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.

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