Zarqa family launches initiative celebrating children with Down syndrome

AMMAN — A lack of inclusive learning programmes, the high costs of speech therapy and a lack of respect from society led one family with a child with Down syndrome to launch an initiative ensuring that the disorder is better understood in the Kingdom.

Samah, a mother of a two-year-old child diagnosed with Down syndrome, told The Jordan Times that “it was very hard at the beginning, but I refused to give in to the idea that my child is incapable”.

Samah added that her journey was packed with unknown challenges, as well as “a negative societal perspective, financial pressure and negative people”.

However, with the aid of her family, Samah’s daughter is now a child model with over 500,000 followers on social media.

“She became a hero to so many children with Down syndrome,” said Samah. 

However, Samah said that the lack of governmental support is frustrating for parents of children with disabilities. 

She also said that she had to pay “an arm and a leg” to send her daughter to a speech therapist. 

 “The ministry takes on the responsibility of sending kids to speech therapists maybe once a month, which is not enough. The classes have to be intensive for children with Down syndrome to benefit from them,” said Samah. 

“If I didn’t have the financial resources, my daughter would be home incapable of doing anything,” added Samah.

For Down syndrome awareness month, commemorated in October, Samah wanted to conduct a photoshoot for her daughter at her uncle’s showroom. 

Ali Kharfoush, Samah’s uncle, decided to go the extra mile, and launch an initiative to celebrate children with Down syndrome. 

“The love I have for Sarah motivated me”, Kharfoush told The Jordan Times about his reason for starting the initiative. 

Kharfoush added that as soon as he learned of the occasion of Down syndrome awareness month, he decided to come up with an initiative that would make kids with Down syndrome feel happy, satisfied and like an active part of their communities.

“Energy not incapability” Kharfoush’s initiative, was launched on Friday in Zarqa governorate. The initiative sets out to connect people with Down syndrome with one another, and raise public awareness of this genetic disorder. 

“We were able to bring together 30 children with Down syndrome and their families,” Kharfoush added.

He stated that the kids were very happy when they socialised together, and that even their parents felt special and appreciated. 

Kharfoush added that raising awareness is crucial, as “unfortunately we still view people with Down syndrome as less than”.