Girl can’t love – level 3

11-03-2016 15:00

To her mum, Melody Cook is a very special little girl, but a rare genetic disorder means the three-year-old can’t speak or accept love, responding only to affection with aggression.

“If I wanted to give Melody a cuddle she’d clout me. I know that full well, if I ask Melody for a kiss, she’d probably bite me. She was aggressive with me constantly, I had to have my eyes checked, she scratched my eyeball.”

Diagnosed with Phelan-McDermid Syndrome at fourteen months, Melody has a high pain threshold and will often hurt herself without feeling it. She was born without the chromosome 22. Phelan-McDermid Syndrome affects around 130 people in the UK and only 1,500 worldwide. It impacts speech, mobility and cognitive development.

“There’s a lot of research linked with autism that’s going on in in the UK and overseas in the US.”

Although trapped in her little body, Melody does show moments of warmth.

“She came over and she sat next to me and I just thought, ‘Have I done something, why do I deserve this?’ and she passed me a paper and a pen to draw hrt a picture, it was brilliant, it was the best thing, the best affection I’ve ever had from her.”

Rebecca says every day spent with her daughter is a gift and they’ve learned how to show love in their own special way. Rebecca’s sharing her story to raise awareness, but she’s also appealing for help from medical experts, so she can understand more about this rare disease.

Difficult words: disorder (an illness), affection (physical love), cuddle (a long hug), clout (hit), constantly (always), pain threshold (the level when you start to feel pain), impact (to affect), mobility (relating to movement), cognitive (relating to cognition – perception, feeling and thinking), development (growth), appeal (to ask).



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