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Baby Max Weston from Chesterfield, pictured with his older sister Holly, was diagnosed with Batten disease after his sibling suffered a fit and received her own diagnosis
OBSESSED with Harry Potter, YouTube videos and playing football with her siblings, Caitlin Passey seems much like any other eight-year-old.But the ado
People living with rare and complicated health conditions have experienced more challenges than most during the pandemic. However, emerging remote health services offer new opportunities
Like a 'punch in the stomach', is how Megan Willis felt on hearing that her eight-week-old baby with partner John Hall had a life-limiting muscle-wasting disease. 'It was devastating — almost too much, too painful to process,' says Megan, 29, an events manager, who lives with John, 36, a retail manager, in Colchester, Essex. Little Edward has the genetic condition spinal muscular atrophy (SMA), in which the lack of a protein called SMN, vital for muscle development and movement, results in progressively weaker muscles. Until three years ago there was no treatment and babies affected by Type...