Family asked to leave AirAsia plane because of daughter's rare skin condition: A mum's open letter

Family asked to leave AirAsia plane because of daughter's rare skin condition: A mum's open letter

A family was asked to disembark from their AirAsia plane because of their daughter's 'appearance'. The 10-year-old girl was born with a rare genetic skin disorder called Ichthyosis. Read her mum's heartbreaking letter as she tries to come to terms with the whole ordeal.

On 9 April 2016, a family was asked to disembark from AirAsia flight QZ508 from Bali to Singapore. The reason given to the family was that their 10- year-old daughter, Aliya, who was born with a genetic skin condition, was told that she was a "threat to the other passengers."

The rude and insensitive behaviour of the cabin crew of the flight has led to a heartbroken Aliya, and a very disturbed mother. In a recent Facebook post, a mum (whose daughter is a friend of Aliya's) got in touch with Aliya's mother, who had written an open letter to the CEO of AirAsia, Tony Fernandes on the incident.

The post is as follows:

"Please could you spare a few moments to read the following story about the truly terrible treatment of my daughter's friend on a recent AirAsia flight.

My daughter's friend has a very rare genetic skin disorder which means her skin doesn't function as well as it should. She is a remarkable little girl who brings out the very best in my daughter. You may know this little girl, she is 10 years old and goes to one of the big international schools in Singapore and participates fully in life here. The treatment by the cabin crew is shocking and sadly so ignorant. Please read and share. Her mother is happy for you to share this story.

I Could Not Protect My Child…

An open letter to Mr. Tony Fernandes, CEO of AirAsia

Dear Mr. Fernandes,

As a father you know that the most basic instinct as a parent is to protect one’s child. You want to protect your child whom you love more than life itself from anything that can harm him/her. I am a mother and I wanted to protect my child, but I couldn’t protect her. I could not protect my child from the heartbreaking, malicious behaviour of your cabin and ground crew on Saturday, April 9 at 6:30 pm inside the plane of AirAsia flight QZ508 in Bali on route to Singapore.

My daughter Aliya was born with a very rare genetic condition called Ichthyosis. For ten years I nurtured my daughter to be strong both physically and emotionally to tackle her condition as well as people’s behaviour towards her because of her condition. I taught her to be strong and kind even when she was in incredible pain and the world at times was not kind to her. Aliya has embraced this teaching and managed to cope with life until that fateful AirAsia flight when everything unraveled.

Little did Aliya or I know that the worst experience of her life would be in your airlines when your staff asked my little girl to leave the plane because of her appearance and went on to inform me how she would ‘potentially be a threat’ to the other passengers as she may ‘infect’ other passengers. (It was baffling for me to discover that your staff who are all educated could not understand what a genetic condition is).

Your staff managed to destroy the belief that I built in my child over the ten years that the world will not judge her for her appearance but for the content of her character. I was wrong. I was so wrong. My daughter was judged, she was sentenced and her spirit of self-esteem was destroyed because of how she looked. Your staff managed to show with their action what they felt was permissible in AirAsia and that is to discriminate in the name of ‘rules’. Behind the shield of rules, your staff could effectively practice rude, discriminatory behaviour towards anyone — even a ten year old child."

"Ichthyosis is a condition that is not only very rare but it is incurable as well. It is a condition where sweat glands don’t operate. In other words, it is a condition where the largest organ of the body — skin — does not function. The manifestation of this is that an Ichthyosis patient cannot control her body temperature and the skin does not produce any moisture. As a result the skin of these patients will appear scaly and red. While the physical challenge of this condition is manageable (still with much difficulty) with medication, lotions and continuous spraying of water, it is the mental anguish of the patient that is more of a challenge. It is difficult enough to keep oneself functioning and alive, it can be a heavy load to carry when one has to cope with the judgement of the society on the patient’s appearance.

Despite its challenges, my husband, my older daughter and I have done everything in our power to help Aliya to experience a ‘normal life’. Aliya is a happy little girl who loves school, does gymnastics, sings, dances and plays the piano. Aliya has also created a fund to help other children with Ichthyosis around the world called Diya and Aliya’s Friends’ Fund. She actively raises money for the fund to help other children born with Ichthyosis. Aliya wants all the children affected with Ichthyosis to have a as full a life as she has. In addition to her active little life, Aliya also loves to travel even though it is very difficult for her to travel.

Traveling with Aliya means we need to go through the security with all of Aliya’s medications, lotions, water bottles and sprays, several doctors’ letters, and then there is of course the actual act of taking care of her during the flight. The care, the condition — it is all stressful and exhausting for us as the caregivers, but for Aliya as the patient, it is physically painful and challenging. However, Aliya never complains. She keeps up her spirit and tells me not to worry and keeps on reassuring me that she will be okay. This confidence of my little girl was broken into pieces by your staff on that fateful flight. I want to know as a mother, how you expect me to repair the spirit of a little girl?

Please allow me to elaborate on what happened on April 9 on flight QZ508. After several hours of delay, we at last get on the plane. We are all already tired but glad to be heading back home to Singapore. Just as we were settling in our seats, the stewardess (I believe her name was Monica) of Air Asia came over and asked very rudely, ‘Excuse, what is wrong with your daughter?’. I took a deep breath and said, ‘She is fine. She has a genetic condition. Thank you for your concern.’ However, she continued, ‘She does not look fine. She looks terrible. What is wrong with her?’ I tried to explain this to her patiently while indicating we move away to spare Aliya who was listening intently at this point, ‘Again, thank you for your concern. She is fine and now please excuse us’. Monica, the stewardess went over and started talking with the other staff. They kept on looking at us and I knew they were talking about us. Then a ground staff came over and said, ‘Sorry, we need to ask you to disembark because your daughter is a threat to the other passengers…’

I then lost it, ‘Have you gone mad? I had told your colleagues repeatedly that my daughter is fine. She has a genetic condition. You are discriminating against her because of how she looks?’…I said many other things but I don’t remember. I was a mother trying to protect my child. Among the things I said that I do remember was, ‘you are making a judgement call based on my daughter on how she looks, well, I can legally sue you for it.’ Once I evoked law suit, your staff backed down and apologised. However, the damage was done, Aliya started crying, ‘Ma, they want me to leave the plane because of how I look??…’. I hugged Aliya and held her tight. My older daughter also started crying, saying, ‘Ma, how could they say all that? It was not fair. How could they do this to Aliya?’ I had no answer.

As a mother I could not protect my child. As an adult I witnessed a child’s spirit being broken. As an activist who has fought for countless discrimination battles, I could not protect a discrimination victim in front of me. The damage your staff caused was irreparable.

I waited a few weeks to see if time would heal the wounds, but it did not.

What will you do to heal this raw, open wound? What will you do to mend a child’s broken spirit?

A heartbroken mother.

We at theAsianparent send our warmest regards to Aliya and her family, and hope that they recover from this ordeal. 

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Written by

Pavin Chopra

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