The mum of a toddler who suffers with a rare genetic condition is helping to raise awareness of her daughter’s illness ahead of a major funding event.
Two-year-old Alexia Crane, of Wensleydale Avenue, Grange Park, suffered a heart attack when she was just 14-months-old, with her heart stopping for close to seven minutes.
Overall it has been a difficult year; I was very traumatised after coming so close to losing AlexiaMelissa Kimpton
She was diagnosed with dilated cardiomyopathy – a condition where the heart muscle weakens, making it harder to pump blood around the body.
Now mum Melissa Kimpton is encouraging people to put their hands in their pockets to support her daughter by raising money for the Cardiomyopathy Association charity as part of the annual Jeans for Genes Day charity event.
Melissa, 26, said she is now having tests at Alder Hey Hospital to see if the condition is hereditary – but hopes Alexia’s story will raise awareness of the condition.
She added: “Two of my cousins have been diagnosed with muscle problems and at the end of last year my dad died suddenly from a heart attack.
“Losing my father has hit me hard as I keep wondering if I could have recognised any of the signs or symptoms.
“Overall it has been a difficult year; I was very traumatised after coming so close to losing Alexia.”
The results of the body scan allowed the doctors to diagnose Alexia with dilated cardiomyopathy (DCM), a disease of the heart muscle.
Usually associated with older people, DCM is a reasonably common condition that can affect people of all ages, and one in 5,000 people in the UK develop it each year.
While it is not curable, it can be treated successfully, with most of those affected going on to lead a long and full life.
Alexia recovered incredibly well and in the end was discharged from hospital after four weeks. At present doctors are unsure what caused the condition and Melissa is waiting for the results of genetic testing being conducted in Liverpool.
Since then though Alexia has also been diagnosed with metabolic myopathies, which is a hereditary muscle disorder, so it seems very likely that both conditions are linked, although it has not been confirmed.
“Overall though, Alexia is a very happy and bubbly little girl. She loves causing mischief like most two-year-olds do,” said Melissa.
This year the money raised by Jeans for Genes Day will go towards the Cardiomyopathy Association to fund a children and young people’s officer.
The officer will ensure that all families with affected children know about the charity and will develop, promote and monitor the service.
Jeans for Genes Day is on September 18 with everyone invited to wear their jeans to work or school and make a donation.
Sign up for your free fundraising pack at: www.jeansforgenesday.org.