How It Started: Karachi Down Syndrome Program
Published on: June 28, 2021
“We were made to believe, with all our conviction, that our daughter’s life was not worthy of living…” says Ali Allawala, reflecting on the trauma that he and his wife Farzeen faced soon after the birth of their first daughter, Alaiyah.
Alaiyah was born with a diagnosis of Down syndrome.
“When everybody gave up hope on her… she fought back,” says Ali, as he recounts the inspirational tale of resilience that is manifested not only in Alaiyah’s life, but also in the Karachi Down Syndrome Program – which Ali and Farzeen co-founded in 2014, in lieu of the struggles their newborn daughter, Alaiyah had to face due to a lack of awareness and facilities available for kids with Down Syndrome, back in 2011.
KDSP provides various services for children and adults with Down syndrome – and guides their caregivers into ensuring that their development and integration into ‘typical’ society does not suffer because of the stigma associated with the genetic condition.
As Ali put it, despite being amongst the best doctors in the city, they were still told that it was better if their daughter passes away. However, Ali and Farzeen did not give up and neither did little Alaiyah who, despite being on a vent and suffering cardiac arrest due to a lack of adequate attention paid by the doctors just mere weeks after her birth, kept on fighting as her parents found that the best down syndrome clinic was in the city of Boston in the children’s hospital. It was there where Ali’s encounter with one of the hospital’s staff who himself had down syndrome, helped plant the seeds of Karachi Down Syndrome Program (KDSP) in his mind as it gave him hope that, provided they receive proper care and attention, there is no reason as to why people with down syndrome cannot lead normal, healthy lives.
Thus, in March of 2014 KDSP was formed, with their first ever activity to raise awareness being a photoshoot campaign amongst 7 families to celebrate World Down Syndrome Day. Despite requiring 10 families for the campaign, who would come forward and say that their child has down syndrome, they were only able to arrange 7 families. This experience made Ali realize that before they started with the children, they had to work with the families first. Thus, they started a family support group, which to this day meets and holds discussions with an expert on down syndrome.
Once the foundations with the families had been laid, it was time to work with the kids. As Ali’s vision was for kids who had down syndrome to be accepted as normal members of society, their first act was to start partnering up with schools to set up a unique curriculum for children who have Down Syndrome, as children with Down Syndrome have a far superior receptive language than an expressive language. Thus, with the curriculum in place, they started another program, Early Preschool Experience Program which helped prepare children with down syndrome for Preschool, so when the time comes for them to join any normal school, they’re better equipped.
With the base setup for both children, and their families, it was time to change the perception of regular people on down syndrome. Thus, KDSP set up their annual KDSP Carnival, which brought together families of children of all abilities to interact with each other and realize that we’re more similar than different.
When asked about the correct terms for children with Down Syndrome, Ali replied that it should be the person first. Often people say that he/she is a down’s baby or a down’s child. However, that is incorrect, as you have to put the person first. “Down Syndrome is not a stigma and, it should not be a label. It is just an identification that helps us understand how that child will develop.”
To sum up his journey from the birth of his daughter, to the founding of KDSP, Ali added, you have to take it one day at a time, have faith in your creator and whilst sometimes you will question everything, but this is a beautiful journey, that you have been handpicked for.