A Carrickfergus schoolgirl has helped raise awareness of a rare genetic condition by encouraging other local children to ‘dress down’ for a day.
Madison Wright, a pupil at Carrickfergus Central Primary, organised a non-uniform day for her school on September 22. The venture raised money for Carrick siblings Noah and Gracie Coates, who both suffer from Vanishing White Matter disease.
A form of leukodystrophy, VWM disease is a progressive condition that destroys myelin, the brain’s white matter.
Noah and Gracie are thought to be the only people in Northern Ireland with the condition.
As there is no known cure, there have been several events in the local community aimed at funding further research and boosting awareness. These included a coffee morning in March of this year, also organised by Madison.
Her mum, Angela said: “Madison noticed there weren’t many children at the coffee morning, so she decided she wanted to do something that kids could take part in.”
The determined youngster wrote to other primary schools in the area encouraging them to get involved in the dress down day. “Every child was asked to make a donation of £1 to take part,” Angela added.
“We also set up a JustGiving page to allow people who had no connections with the schools to make donations.”
And with over £2650 raised and counting, the local mum couldn’t be prouder of Madison’s efforts: “It’s nice that she cares about other children her age, and that the community can come together like this and let the Coates family know we are thinking about them.”
Noah and Gracie’s mum, Sarah added: “Madison is an amazing young lady with very compassionate spirit. She is very unique for someone of her age, to be thinking about others in the way she does!
“We feel so blessed as a family to have met Madison and her amazing family. They’ve been a brilliant support to us especially Noah and Gracie; it’s not just the financial support, which will go towards a special space for Noah and Gracie but Madison has also been amazing at highlighting Leukodystrophy. It helps other children to become more aware of children with different disabilities.
“Carrickfergus community are also amazing and we’d like to thank all the schools, pupils and parents for their support.”
To donate to the campaign, visit www.justgiving.com/crowdfunding/angela-wright-5