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Her kids' rare illness the spur for Sarah and pal to don their trainers for Runher

By Staff Reporter

Elaine Shanks took part in the 10K with her friend Sarah Coates, whose two children suffer from an extremely rare degenerative genetic disease.

Sarah's children Noah (8) and Gracie (5) are affected by the disease Vanishing White Matter Leukodystrophy. Elaine and Sarah are hoping to raise both awareness and funds for the disease.

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Sarah explained that Noah was diagnosed before his third birthday and is now suffering from mobility issues and has started to use a wheelchair.

The pair are thought to be the only children in Northern Ireland with the disease.

She said: "They start out relatively OK but as time goes on their functions and abilities begin to deteriorate.

"It means gradually they will lose all of their functions. They use the hospice but we have to go to Holland for treatment with a specialist because it's so rare."

Vanishing White Matter Disease is caused by a mutation and is thought to affect just 200 families across the globe.

Currently, there is no cure for the disease and sufferers' lives are typically limited to their teenage years, but the pair hope that by raising awareness and encouraging research they will be able to change the lives of Noah and Gracie.

Elaine hopes to run a total of 100km split over 10 events. She said: "Most races will be in London but the most special is the first race in Belfast.

"All money raised will go to help with the costs of Noah's treatment and travel, as well as medical equipment he will need as the disease progresses."

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