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‘Let’s fly home’: Mother shares story of daughter with cerebral palsy

By Sawsan Tabazah - Nov 19,2017 - Last updated at Nov 19,2017

Miryana Jaroun was born with cerebral palsy, which requires her to undergo surgery in order to be able to walk independently, according to doctors (Photo courtesy of Lina Abu Samha)

AMMAN — A walking aid is what inspired Lina Abu Samha to write a book about her daughter Miryana Jaroun, a child with cerebral palsy (CP), with the hopes of raising funds for a surgery that would enable her to walk independently.

“Let’s fly home” portrays Miryana, a child with CP, as the bright sibling of two brothers, Jaafar and Mustafa, as she helps them to get home on time by flying with balloons tied to her walker, Abu Samha told The Jordan Times over the phone on Sunday.

The story aims to change the societal perception towards children with disabilities and assist them in integrating into society, especially among their peers at school, Miryana’s mother said.

“Story telling is one of the few activities that my three kids can enjoy together. However, I hardly ever found a character that resembles my daughter in any story. I want to make children like my daughter more common for other children through such a story,” she explained. 

Nisreen Oteibi, the president of the Cerebral Palsy Jordan Society (CPS) said that CP patients often struggle with rejection and lack of support that hinder their integration into society.

“Support and acceptance from a friendly society can ensure a better integration of CP patients,” Otaibi said. 

The ratio of CP patients in Jordan was 0.4 per cent in 2016 and has not shown decline over the years, the CPS president said.

 

Raising funds for the surgery

 

Miryana has been suffering from chronic neuromuscular spasticity — manifested as an especially high and constant stiffness in the muscles of the lower body — that requires spinal cord surgery, also known as Selective Dorsal Rhizotory.

However, that medical practice is not available in Jordan, according to doctor Saad Abdullah, consultant of neurosurgery and spine surgery.

“In such conditions, continuous physical and occupational therapy can prevent contractures and reduce the severity of symptoms but will never allow her to walk,” he told The Jordan Times.

Miryana’s family contacted St Louis Children Hospital in the US, whose report confirmed that “she was an excellent candidate” for the surgery after reviewing her medical history. 

In a report sent to the family, Surgeon T.S Park said he expected “Miryana to be able to walk independently in all environments” if she underwent the surgery.

“Imagining my daughter able to walk freely motivates me to continue raising awareness and never stop until this dream comes true,” the mother added. 

Abu Samha has been collecting donations for her daughter’s surgery which is expected to take place in April 2018, in addition to the aftermath therapy, which will amount to an overall cost of $100,000.

Through the sales of over 4,000 book copies since September, as well as online fund raising, she said she has managed to raise $ 33,000 so far.

The family of Miryana is accepting donations at
www.gofundme.com/SDRmiryana.

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