On love and inclusion of “a beautiful gift from Allah”

By Puteri Balkish

Dina and Haziq were just 28 when they brought their beautiful daughter, Alayna to the world, not knowing that she comes with extraordinary traits and characteristics.

The doctor broke the news to Haziq after Dina gave birth but Haziq decided to remain calm. “Whatever it is she is still our daughter; whatever it is we will still do our best; I take it as a gift from Allah,” he said when the doctor asked how he felt at that moment.

Alayna was named from the meaning “gifted upon us” in Arabic. Both her parents believed she was a beautiful gift brought upon them, which in Iranian means ‘princess’.

Her middle name Rose, represents their loving family, Dina’s father named Idrose, Haziq’s aunts, named Rose, and Alayna Rose came along.

Alayna and Mummy and Daddy ushering 2021

The next morning when their parents came, the doctor broke the news. Dina felt a surge of mixed emotions, not due to the condition her daughter was born with, but felt hopeless as she was afraid of negativities spoken on the internet regarding Down Syndrome (DS).

The driving factor for these young parents was that their daughter was nothing short of lovable and the Instagram creation of @nothingdownaboutalayna is to educate and raise awareness of these children, the positives and the negatives, how these kids can live a normal life.

Dina and Haziq felt that it is crucial for them to help other parents in the same boat.

Their parents were supportive while Dina and Aiman were trying to process their emotions. Dina’s mum met the Head of Therapy at the hospital and they started right away after a week Alayna was discharged. Both of their families shared videos of positive issues on DS, but realised there were none from Malaysia, and that triggered their drive to educate the society to break the stigma.

“We always knew how we were going to raise our children, we’re both from such a close-knit family and we want that for our children. We feel that love is so important, not to an extent where we spoil them but kids nowadays, committing suicide and what not means that their foundation is not strong, so we don’t want that for Alayna,” said Dina on the essentials of support for all children.

No pool, bathtub it is

Dina and Haziq heard from other families with DS kids that they stay at home and do nothing productive with their lives but they insist, “We want to give her that, to lead a normal life, give the tools for her to be happy with her life and do something that contributes back to society.”

“We are blessed to be able to send Alayna to therapy, some people are not – we understand that so we post up on her social media to help other parents who are not so fortunate to send their kids for therapy,” mentioned Dina on exposing Alayna on Instagram with a positive message across.

“If you take it as a burden then everything is going to be negative, but if you look at it positively, it will become a positive journey and you will enjoy the whole journey and the whole process”, said Haziq when asked about raising Alayna.

Alayna rocking on her pony

As compared to normal children, Dina mentions that with improper care and guidance the child would still be growing impoverished of proper understanding of their environment but with DS children, despite the longer process, she believes that constant motivation with any children as long as the parents are willing to give their all, the child would grow well.

“We are very blessed that every message we’ve received is very positive but with our friends or family members who don’t know about DS they will ask why isn’t she walking yet, we don’t know how to tell them that she has that condition. Even doctors who we believe are well educated put her condition in a negative connotation, why not see the positive of things?”, uttered Dina.

They as first-time parents felt down as Alayna has twin cousins that are only a month apart, and at first Dina felt like she was comparing Alayna with her cousins but she realised that the best way to look at Alayna is to see her as she is.

“In terms of awareness in the society, normal humans need support, so why do DS kids deserve any less? We hope people understand the need for inclusion, that kids like Alayna should be able to mix around in school and go to university”, said Dina and Haziq.

Haziq spoke of no insurance coverage of DS children in Malaysia, when in Australia there’s a scheme for it and hopes that the government would initiate this for special children.

That is why we set up @nothingdownaboutalayna on Instagram, so that she feels included and SHE IS INCLUDED. Alayna has five classes in a week, what if she is equipped but the society doesn’t accept her for who she is?asked Dina.

In ten years to come they hope Alayna Rose comprehends their wishes, “Do what you love, know that you are loved by everyone around you, know your worth. Treat everyone equally, so that people can see the bigger picture through you.”

“We hope that this is the first step to change public perception towards down syndrome, and so that they believe that everyone with a syndrome – deserves a voice out there.”

Mummy Dina and Alayna Best Friends Forever

In the long term, they wish to learn from those parents who have kids with DS, to help parents educate their children on this matter, to share and exchange experiences and journeys, exchange information on DS and ultimately increase awareness of Down Syndrome in Malaysia.***

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