Bingham mum talks about her twins’ genetic disorder for Jeans for Genes Day
A mother from Bingham has told the extraordinary story of her twins, both of whom have cystic fibrosis (CF).
Zoe Elliot has talked about her seven-year-old children Alex and Isobel, loving twins who have to be kept apart to make sure they do not cross-infect each other if they contract an infection.
Zoe is sharing her story to make people aware of the condition and also of Jeans for Genes Day on September 22, an annual fund-raising event helping Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.
Zoe said: “When either Alex or Isobel gets a lung infection, I have to separate them, because the risk of cross-infection is too great. I tell myself it’s for the best, but I can’t help but feel that I’m neglecting the other twin.
“Now they’ve started questioning why they have to be apart and trying to explain ‘nasty bugs’ to seven-year-olds isn’t easy. They pine for each other and speak regularly on the phone and send each other emails but it’s not the same, they want to be together. No doubt it will only get more difficult the older they get.”
“After a difficult start to life with lots of health issues and time spent in and out of hospital, now seven, they’re very bright children who love school.
“I think they’re confident because I don’t mollycoddle them. I need to know they’ll be able to manage their CF when they’re older. So I always insist doctors speak to them directly, not to me.”
Cystic fibrosis affects the gene that controls the movement of salt and water in and out of cells. This results in a build-up of thick, sticky mucus in the lungs, digestive system and other organs, causing a wide range of symptoms affecting the entire body.
Zoe has stopped work so she can focus on keeping the twins well.
Jeans for Genes Day funds the work of the charity and provides grants to organisations for projects that aim to transform the lives of children with genetic disorders.
For more information on the charity and fund-raising events go to www.jeansforgenesday.org