Wednesday 20 September 2017

'She's trapped in her own little body' - Meet the four-year-old who's 'unable to show love' due to rare condition

Melodie Cook (4) suffers from a rare condition called Phelan-McDermid Syndrome which leaves her unable to show love or affection.
Melodie Cook (4) suffers from a rare condition called Phelan-McDermid Syndrome which leaves her unable to show love or affection.

Sasha Brady

A mum has spoken of the heartbreaking condition which leaves her young daughter unable to show love or affection.

Little Melodie was diagnosed with the extremely rare condition, Phelan McDermid Syndrome, which leaves her unable to speak.

Not being able to use her voice leaves the little girl feeling angry and frustrated and sometimes lashes out at her mum, Rebeccah Cook.

"I've never had a cuddle or a kiss," said Rebeccah (27) from Stockton in England.

“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.

She never cried and failed to reach developmental milestones like most other babies.

Her mum said: "She was just a lifeless baby until she was about 18 months old.

"When she was diagnosed, it felt like we were grieving for a child that didn’t die."

There are only 1,500 diagnosed with Phelan McDermid syndrome which affects speech, mobility and cognitive development.

Melodie's 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 heartbroken mum also said 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 (8) 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.”

The four-year-old is unable to go to nursery but she enjoys the sensory apps on her iPad, listening to music, particularly Eva Cassidy, and loves the Sesame Street character Elmo. She also has a favourite film - Roald Dahl’s Matilda.

Rebeccah and Melodie's father, Mark Sanderson, have been trying to raise awareness for the disorder.

Last February, Rebeccah met up with the founder of the condition, Dr Katy Phelan who travelled from America to meet the family in London.

She has also had invaluable support from the Phelan-McDermid Syndrome Foundation UK which she described as her "lifeline".

Rebeccah now hopes to raise awareness of the syndrome and gain more answers about it.

She said: "It is hard. There are times when I have sat and cried. I just look at her and think 'How can I help this little girl?'"

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