Sarah Long,oldest survivor of Morquio syndrome, pleads for NHS to provide expensive drug to treat conditionEvery day Sarah Long becomes weaker. She cannot sleep for more than an hour at a time, or 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, or an extremely scarce degenerative impairment,caused by lost enzymes, that has stopped her from growing since the age of six.
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Source: theguardian.com