Boy diagnosed with rare muscular dystrophy in UK, parents are raising money now


Rory Bentley, now four, was just 18 months old when diagnosed with muscular dystrophy. His parents suspected something was wrong when they saw him having difficulty walking compared to children his age.

Speaking to Liverpool Echo, father John Bentley, 38, and mother Kerry Bentley, 38, a resident of Port Sunlight, UK, said they realize Rory’s legs will come together. below him when he walked and despite minimal physical activity, he was very tired.

The couple initially saw several medical professionals, but no one was able to explain the reason to them.

The family then went to a private doctor in London who performed DNA tests in which Rory was discovered to be suffering from muscular dystrophy. It took them about a year to find the reason.

Last year they went to Alder Hey Children’s Hospital in Liverpool, UK where they received information about the Muscular Dystrophy UK charity, which helped and supported them with all the details or information required and also guided them on what to do or who to talk to. concerning the same.

John says the charity has also helped them connect with other families and people with muscular dystrophy because the disease is a rare condition and there are many different varieties.

John and his wife Kerry also mentioned that it was easier for them to recognize the symptoms because they had had another child, Thomas, a year before Rory. Thus, they were able to compare the experiences of the two.

The couple are now fundraising for muscular dystrophy disease in partnership with the Muscular Dystrophy UK charity. For this, John is ready to take a parachute jump requiring a minimum of £ 400, or Rs 40,327.93, in donations.

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