Me and my illness: Film shows a child's view of genetic conditions
22:13 GMT, 15 September 2012
Four children born with serious genetic diseases have stepped in front of the camera to tell other youngsters what it’s like to live with illness.
Released to mark the fundraising event Jeans For Genes Day on October 5, the children reveal in poignant detail how their conditions affect them.
From being bullied in the playground to needing to get up at 6am to take a raft of medicines, they explain in their own words how a genetic glitch that happens at conception can completely change a person’s physical appearance, and health.
My story: Tamilore with sister Tarami. The ten-year-old reveals how he now needs a crutch to walk
Genetic Disorders UK, the charity behind the project, hopes the films will help children understand conditions ranging from common disorders like sickle-cell anaemia and cystic fibrosis to Treacher Collins syndrome, which stops the jaw, cheekbones and ears from forming in the womb.
Ashley, 11, reveals how he has undergone 30 operations to rebuild his jaw after being born with the condition.
He says that after being bullied at primary school, he would hide in a cupboard to escape the taunts, while ten-year-old Tamilore reveals how sickle-cell anaemia has caused such damage to his hip that he now needs a crutch to walk.
But the message is positive, too – that the children are as active and sporty as any other.
In the UK, one in 25 children (30,000 babies each year) is born with a genetic disorder or genetic birth defect, and Caroline Harding, of Genetic Disorders, says: ‘We are so grateful to these young people who have given us such an amazing window into their lives.’
The films come with teachers’ notes and class activity sheets for children at Key Stages 1-4. genesareus.org