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Phelan-McDermid syndrome

Melodie Cook has a rare condition which means she can't talk or express emotions :
- Only 1,500 people in the world have been diagnosed with it.

A brave mum has told of the heartbreaking condition which leaves her young daughter unable to show love.
Rebeccah Cook cannot comfort Melodie when she is upset. The little girl from Stockton suffers from an extremely rare condition which means she has no voice. This causes extreme frustration for the toddler which results in her lashing out and becoming violent.

“I have never had a cuddle or a kiss,” said Rebeccah, 27.
“She doesn’t show emotions; the only feeling we see is her anger and frustration. We’ve never seen her react to love.
“It’s a dark place for her. She’s trapped in her own little body.”

Melodie was diagnosed with Phelan McDermid Syndrome when she was 14 months old.
There are only 1,500 people in the world with the rare genetic disorder which affects speech, mobility and cognitive development.
The condition also causes aggression, sleep disturbance and frightening seizures.
“Her behaviour is very autistic and she can be incredibly violent,” said her mum.
“She has knocked my tooth out and pulled clumps of my hair out and she can be very destructive.
“To look at her she looks ‘normal’, and this causes very mixed reactions when we’re out and about.

“Children look as if to say ‘Why is that girl hurting her mummy?’”
The condition also causes a decreased perception of pain.
“She’s trapped her finger in a door and has fallen down the steps and I’ve never known her to cry,” explained Rebeccah.
“You’re constantly assessing everything because she doesn’t have any sense of danger.”

Melodie’s older siblings, Whitney, eight, and five-year-old Alfie, have also had to adapt.
“Alfie, with him being five, he just wants to adore her and he struggles to understand that he can’t cuddle her,” said Rebeccah.
“Whitney is very quick at getting out of the way.”

Melodie was born at 31 weeks in October 2012. Rebeccah and her then partner Mark Sanderson were expecting twins but sadly lost one of the babies at 29 weeks.
Rebeccah and Melodie were sent home but a community midwife raised concerns and sent the jaundiced baby back to hospital where she spent three weeks in special care.

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