AN ACCRINGTON family are raising awareness about kids with genetic disorders by getting behind Jeans for Genes Day next week.

Charlie Fletcher, aged 11 suffered severe nosebleeds and it was the first sign of a problem and later tests revealed aplastic anaemia or bone marrow failure.

Doctors later discovered it was the result of Fanconi Anaemia (FA), a rare, life-limiting genetic disorder causing bone marrow failure in children.

His parents were warned he would die without a bone marrow transplant.

But after a very difficult bone marrow transplant, Charlie has remained well and is a happy little boy.

Now mum Lucy Hamlin says it is important that everyone supports Jeans for Genes Day from September 16-20.

She said: "People know a lot about cancer and other conditions but they don't know about rare genetic ones so it is important to raise awareness about Jeans for Genes Day.

"Charlie had a transplant and has been cleared but it is now about us looking for what could happen in older age."

Although life expectancy is currently listed at 29, improvements in medical care mean people with FA are living longer, although it’s unclear how the condition affects older adults – a current study is looking at this.

Lucy added: "He has been change twice a year for cancer but we don't quite know what the future holds and that it another important thing that some people don't know how it will affect them in future."

Despite this, Charlie enjoys a happy life including being head boy at his primary school and having hobbies such as jujitsu.

Lucy said: "He has done really well at school with good SATS results which was is great because he has had to go into hospital for tests.

"When he was in hospital he picked up gaming but he also enjoys climbing which is great when we want him to get outside and be active."

Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.

Money raised on Jeans for Genes Day fund the work of the charity and provide grants to organisations for projects that aim to transform the lives of children with genetic disorders around the country.