Nork toddler with rare genetic condition captures heart of community

This Is Local London: Melody at a make-a-thon to raise awareness about her rare condition Melody at a make-a-thon to raise awareness about her rare condition

A toddler with an extremely rare genetic condition has captured the heart of a community.

People have donated about £3,000 to help buy specialist equipment for Melody Luckman, who is unlikely to walk or speak more than a few words.

Melody, just 19 months old, is one of only five children to be diagnosed with CASK gene mutation in the UK since its discovery in 2010.

It severely affects parts of her brain, balance and learning ability.

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Her mother Karen, 39, from Parsonfield Road, Nork, thanked everyone who had donated towards a lycra suit, a beanbag seat, wheel chair buggy parts and a portable support seat.

She said: "We are overwhelmed by the support and so, so very grateful. It’s difficult to accept help sometimes, but you live each day and deal with it."

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The family were told about the diagnosis when Melody was eight weeks old.

Mrs Luckman said: "It turns your world upside down. You grieve for the life you thought you were going to have.

"As much as you love your child whatever, you have hopes and aspirations before they arrive. When that is taken away from you, you have to re-evaluate your life."

Mrs Luckman said: "It’s a massive life change for her and us. We are just after awareness."

She said they have had held a couple of events including a collection and face painting at Asda in Burgh Heath on Saturday, February 8.

To follow her story visit The Melody Maker Facebook page.

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