A WARRINGTON mum is set to run the London Marathon to raise money for a disability charity as her daughter has an ultra-rare genetic condition.
Joanna Ducker, 43, discovered that her youngest child, Lexi, had difficulty hearing months before her second birthday.
Genetic testing has revealed that the now six-year-old has Barakat syndrome – which affects just 200 people in the world.
“We first realised there might be a problem when we noticed she wasn’t saying anything or responding to noises like the doorbell,” said Joanna.
Lexi was given hearing aids and speech therapy – until around 18 months ago when her audiologist ran a genetic test and diagnosed Lexi with Barakat syndrome.
“For her, it wasn’t inherited, it’s just happened – they call it a spontaneous event,” said Joanna.
“There are only a couple of hundred people in the world with the syndrome but there could be a lot more that aren’t diagnosed.”
Joanna, who lives in Appleton, is now set to take on the London Marathon to raise money for Sense – a charity that supports adults and children living with complex disabilities, including those who are deafblind.
“I only discovered a love of running three years ago and, not too long ago the idea of completing a marathon would have been unthinkable,” said Joanna.
“But then I learned about the charity Sense and it’s given me the motivation to push beyond what I thought I was capable of.”
Sense offers a variety of support and aims to help children and adults who have complex disabilities communicate and experience the world.
“Sense’s mission to help people with complex disabilities feel better understood, connected and valued resonated with me deeply,” said Joanna.
“Lexi is super confident – she isn’t fazed by her hearing loss and did a show and tell about her hearing aids in school, but I know not all children with hearing impairments are as lucky as her and I’m keen to support as many people in that position as possible.”
So far, Joanna has raised more than £2,500 for Sense and will take on the London Marathon on Sunday, April 21.
Lexi and her brother Daniel, 10, will take part in the Mini London Marathon for children the day before – where Daniel will run the entire 1.6 mile course and Lexi running the final mile to cross the finish line.
“It’s fantastic that Joanna has chosen to support Sense as she runs the London Marathon, so our charity can continue to improve the lives of children and adults with complex disabilities and make sure no-one is left out of life,” said Caroline Buckland, head of events and community fundraising at Sense.
“We’re looking forward to cheering her on – and Lexi and her big brother, Daniel, in their Mini London Marathon. It’s going to be a great weekend!”
To sponsor Joanna and donate to her Just Giving page – click here.
For more information about Sense and the work they do supporting people with complex disabilities, visit the website.
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