Dust down the flares, squeeze into those skinnies and wear that holey old pair with pride, this Friday Jeans for Genes are asking Manchester residents to wear their denims to support families caring for children with genetic disorders.
Jeans for Genes are in their 18th year of fundraising to support Genetic Disorders UK, a charity which works with families to care for and support children with genetic disorders.
One in 25 children in the UK are born with a genetic disorder, of which there are more than 6,000 and fundraising days offer support and education.
Each year thousands of office workers, parents and children fit into their favourite jeans and donate £1 to help sufferers of e Cystic Fibrosis, Sickle Cell Anaemia, Huntington’s Disease, Haemophilia and Brittle Bone Disease.
Around 23 wide-ranging charities will benefit from Jeans for Genes day which vary from regional support groups which help families cope with the problems genetic diseases bring, to helping fund the National Dwarf Games 2013.
Head over Heals in Cheadle is a beneficiary of the Dwarf Sports Association, with play days allowing families to meet other going through similar situations.
Jessica Rowlinson of Cheshire was born with Alstrom syndrome, a genetic condition affects one in a million children worldwide.
Jessica’s heart is severely damaged and by the age of five she had suffered three strokes.
Her family was told there was little more doctors could do yet only an hour after being called to say goodbye, she woke up. “Five hours later she was pulling on the neurologists’ beard!” said her mum, Karen.
Jessica then underwent heart transplant surgery, spending around 11 months in Alder Hey hospital before returning home.
Karen describes Alstrom as ‘a bit of a lottery.’
“As far as coping with it, you just have to get on with it. Alstrom can progress slowly, they closely monitor Jessica to see if any other organs are affected,” she said.
“She loves going swimming and trampolining. She loves being with people and playing games. I’m proud of everything she achieves. She’s learnt to talk after the strokes. It really inspires us as parents to keep strong.”
Alstrom Syndrome UK are a Jeans for Genes Day grant charity and around £12,000 of the money raised on Friday will go to Alstrom UK to fund the development of a multi-lingual information DVD ‘Living with Alstrom’ to provide information to families wanting to learn more about the disorder.
Genetic disorders are the biggest killers of children aged 14 and under and the premise of Jeans for Genes is simple and yet effective: wear jeans, change lives.
An annual event, this year they are aiming to raise £2.5million to continue supporting genetic disorders in the UK.
To find out more about Jeans for Genes and their work, click here.
Picture courtesy of certified su via Flickr, with thanks.
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