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Parents of special needs children are superstars: Naeem Haque | The Express Tribune

Actor Nimra Khan and model Naeem Haque recently made an appearance on Time Out with Ahsan Khan shedding light on their personal struggles outside of work. Naeem spoke about his son, Izaan, who suffers from a rare genetic disease, with Nimra reflecting on her difficult marriage and subsequent divorce.

After being questioned about his absence from the fashion scene, Naeem shared that his commitments extend beyond the world of modelling. Sharing about his work outside of fashion, the model shared, “I’ve been running my business for the last 15-16 years. I’m into construction, interior  designing and architecture. Recently, I’ve also been blessed with a son.” 

Talking about his son, he explained, “His name is Izaan and he’s a special child… The disease he has is a metabolic condition. It’s called NGLY1. There are only 50 children in the world who suffer from it. Right now, there has been research going on regarding his condition at Stanford. As soon as they have a medicine for it available, we’re going to travel there with Izaan so that they can inject it.”

According to USA’s National Organisation of Rare Diseases, “NGLY1 deficiency is a rare disorder that can affect multiple systems of the body. Affected individuals may have delays in reaching developmental milestones, intellectual disability, movement disorders, seizures, liver disease, and an inability to produce tears when they cry (alacrima), or they may produce tears very infrequently.” 

Reflecting on fatherhood and the difficulty of parenting a special needs child, he shared, “I feel like, so far, everything I’ve done in my life was for myself. When God gave me Izaan I would ask God what I had done wrong to have been given a special child. You know how we say ‘why me’? As a reply, I felt God saying to me that he had blessed me with so many luxuries as well. Why did I never say ‘why me’ then?”

He continued, “After Izaan, I realised that happiness is the little things like having the ability to tear up or having motor skills. He doesn’t have that. He couldn’t walk or talk. He’s seven years old.”

On his responsibility as a father being greater than his responsibility to work frequently, the model added,  “I won’t be questioned about why I haven’t been doing work, but I will be questioned over why I did not take care of my son.”

Stressing the importance of recognising parents who raise special needs children, Naeem shared, “He is improving because we give him so much time and we take him out with us as well. I think I’m sharing this because there are a lot of parents in Pakistan who have special children, and I believe they are the real superstars. Those parents dedicate their entire lives to their children. If you go to Aga Khan Hospital and have a look around, you will see the conditions the children are in. For [those parents], it’s necessary to let them know that they are strong and that God has chosen them to take care of these children.”

On the other hand, Nimra, who is known equally for her acting and social media presence, shared about the vitriol that can be found online, “I am a woman, but no male stranger or family will ever think about the fact that their sister, wife, mother or daughter can also be in my position. They only see us as artists, not human.”

Speaking about her divorce from ex-husband Raja Azam, Nimra shared, “When I got a khula, I wouldn’t talk about it. I wanted to keep things hidden because I didn’t want people to talk. But nothing is hidden anymore.”

On the varying narratives surrounding her marriage, the actor explained, “I would just like to explain to people that there are two sides to every story. If I’m speaking to you on the phone and the signal gets disrupted because I’m on Jail Road and the call drops, you will assume that I hung up on you in the middle of an important conversation. I would have no way to explain myself because of the network failure.”

Raja Azam, whom the actor tied the knot with in April 2020, took to his Instagram Stories to confirm their divorce in a live session in 2021. In the video where he details the reason for their divorce, he can be heard saying, “We are divorced.” And in a rather derogatory manner, he goes on to announce that he “got rid of her” because “she was a headache.”

In September 2020, several speculated whether Nimra had gotten divorced or separated from her husband after she shared pictures of herself from an ‘accident’. Many asked whether her injuries were really the result of tripping down from a flight of stairs or domestic abuse.

On there being more to the situation than she lets on to the public, Nimra shared, “There was the side of my life that I showed in the pictures I posted with that man, and there’s the side that I went through in the six months that I was married to him. I couldn’t upload that on Instagram.”

Nimra continued, “To cut the story short, I would just like to say to the girls watching that you should only accept the negativity that you can bear. If you feel like it’s going beyond your capacity, then I would like to request the parents to provide support to their daughters so they can take the step to leave without fear.”

On maintaining privacy, she added, “I’ve seen a very tough time, but I know these people will only accept me so long as I’m smiling. No one likes a crying face. I laugh all the time because the more you show people your weakness, the more they take advantage of it.” 


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