“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.
