Mother tells of how small bumps scattered on her baby boy’s back led to him being diagnosed with an ultra-rare debilitating condition

In family photo albums, Harley Harris beams with bright blue eyes, his parents smiling proudly beside their firstborn son.

That was in 2010, when Kelly and Ben Harris, from Welling in Kent, believed they had a happy, healthy baby boy. Nothing hinted that their world would soon shrink to hospital corridors and invasive surgeries.

But at just 10 months old, Ms Harris noticed small bumps scattered across her son’s back – a quiet discovery that marked the beginning of

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