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Children learn about family’s genetic disorder

by Teesdale Mercury
October 29, 2019
in News
Children learn about family’s genetic disorder

WEARING DENIM: Brownies and Rainbows showed their support for Jeans for Genes charity campaign. Wearing the charity's T-shirt's are

RAINBOWS and Brownies in Barnard Castle donned denim to show their support for a fundraising event called Jeans for Genes, for people with genetic disorders.

Leader Lindsey Rudge introduced them to the charity Genetic Disorders UK. She has been fundraising for the charity, which provides support and help for people with genetic disorders, for eight years following the birth of her grandson.

The charity hosts an annual day, inviting people to wear denim to highlight the 6,000 genetic disorders that affect one in 25

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people.

This year, Ms Rudge gave a talk to Brownie and Rainbow troops in Barnard Castle to explain more about how the charity helps people. Ms Rudge’s daughter, Laura, was born with a rare genetic disorder that is characterised by the absence of the radius

bone.

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When her grandson, Luke, 8, was born it looked like the disorder had not been passed on.

However, Ms Rudge, who works part time at the Teesdale Disability Access Forum shop, in Barnard Castle, said: “When Laura was pregnant the doctors did lots of scans and because all of his limbs were showing we thought everything was fine.

“But we realised something wasn’t right when he was a toddler and he was genetically tested and it showed that he has inherited half of Laura’s condition, which is known as a 1Q21.1 microdeletion.

“Although Luke looks like other little boys he does have to take a lot of bowel medication and it does affect his growth and his ability to learn.

“As a family we’ve been supporting Jeans for Genes since Luke was born but this year I thought I would try and raise some awareness as well.”

So wearing their Jeans for Genes T-shirts Ms Rudge, accompanied by Laura and Luke, explained to girls in four Brownie and Rainbow troops about the work of the charity.

Ms Rudge added: “I’m really chuffed by doing the talks and having the box in a shop we’ve managed to raise £155, which is brilliant.”

The charity provides support, funds specialist nurses and helps train helpline staff, as well as funding specialist equipment for those with genetic disorders.

For more information visit jeansforgenesday.org 

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