direct to your inboxThe grieving parents of a three-year-old boy who tragically died from a rare disease have told of the 'incredibly special' experience they had after being allowed to take their son home before his funeral.
Rubén McKeown suffered from X-linked Myotubular myopathy which causes muscle weakness and affects movements and vital functions like swallowing, the Liverpool Echo reports.The rare genetic condition affects one in 50,000 people and there is no known cure.Those diagnosed with the illness have an average life-expectancy of just over two-and-a-half years.But Rubén surprised medics by coping with his limitations extremely well.And in his early couple of years, he was managing to eat independently with his proud family.
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