Rory Bentley, now four, was just 18-months-old when he was diagnosed with muscular dystrophy. His parents suspected something was wrong when they saw him struggle to walk as compared to children his age.
Speaking to Liverpool Echo, father John Bentley, 38, and mother Kerry Bentley, 38, resident of Port Sunlight, UK, said they realised that Rory’s legs would get way beneath him when he walked and despite the minimal physical activity, he got very tired.
The couple consulted several medical professionals initially but nobody could tell them the reason behind it.
The family then consulted a private doctor in London who took DNA tests wherein it was found that Rory had muscular dystrophy. It took them a year or so to find the reason.
Last year, they went to Alder Hey Children’s Hospital in Liverpool, UK, where they were given details of Muscular Dystrophy UK charity, who helped and supported them on any required details or information and also guided them on what to do or who to speak to regarding the same.
John says that the charity also helped them connect with other families and people suffering from muscular dystrophy as the disease is a rare condition, and there are many different varieties of it.
John and wife Kerry also mentioned how it was easier for them to recognize the symptoms as they had another child, Thomas, a year before Rory. So, they were able to compare the experiences of the two.
The couple is now raising funds for Muscular Dystrophy disease in partnership with Muscular Dystrophy UK charity. For this, John is set to do a skydive requiring a minimum of £400, which is 40,327.93 rupees, in donations.