A MUM of twins who have a rare genetic disease is urging people across Notts to support Jeans for Genes Day today.
Louie and Freddie Dawkins are only seven years old but mum Sarah says they are unlikely to live beyond the age of 14.
Both boys appeared healthy when they were born and Sarah and husband Andrew, of Hucknall, only noticed something was amiss when they were not talking by about 18 months.
About a year later, they were diagnosed with autism but then their vision started to go.
"We noticed they were tripping over things and that started the ball rolling with looking into more serious things," said Sarah.
"It was horrible, they had been born with eyesight. You can see from the baby photos their vision was fine.
"Then one eye was flicking one way, wobbling from side to side."
Just before their fourth birthdays, the twins were registered blind.
And shortly after that, it was confirmed they had Batten disease, a rare, terminal genetic condition.
They cannot speak, they get very agitated when they cannot get across what they want to communicate and they wake up several times in the night. They are likely to develop epilepsy and lose their motor abilities as the condition worsens.
"It's horrible to see your children go downhill," said Sarah, who, alongside her husband, is a full-time carer for the boys.
"You want to make their lives as enjoyable as possible while they're here.
"Anything that helps improve their life makes a massive difference."
Today, hundreds of people across Notts will make donations to wear jeans to work for Jeans for Genes Day, to help people like Sarah and her family. The event supports research aiming to prevent all genetic conditions. The Batten Disease Support and Research Association, the specialist charity which funds research and supports families, is supported by Jeans for Genes.
Sarah and Andrew recently visited London for an international conference with the charity and they got to speak to scientists from around the world and meet other parents.
Only 200 children in the UK have the condition.
Their accommodation in London was paid for by Jeans for Genes and Sarah says it would not have been possible to attend without that support.
To support Jeans for Genes, or for more information, go to www.jeansforgenesday.org
