Harraz is an active toddler who enjoys learning new things. He loves dancing and music. As my husband works shift hours, we don’t get to spend that much time together as a family, but when we do, we usually enjoy going out to eat and window shop.
Sometimes, we take Harraz to waterparks and indoor playgrounds. If we stay home, we enjoy playing with him and dancing to songs together.
While we are like most regular families, the difference is, I am 80 per cent deaf. This is because I have NF2, or Neurofibromatosis Type 2. Itʼs usually a hereditary condition but it
could also be a "spontaneous mutation" of the gene cell as it is in my case.
“Itʼs usually a hereditary condition but it
could also be a "spontaneous mutation" of the gene cell as it is in my case.”
This means that I am the first in my family to get it. I have tumours growing on my nerves and they are present mostly in the brain and along my spine. There is no cure, so unless they are causing problems or growing bigger, they are left alone, untouched.
I found out about my condition in 2001, when I was 12. I started having tinnitus in my left year. This is a perception of noise or ringing in the ear. After going to the doctor, a tumour was found on the auditory nerve of my ear.
Once the tumour was removed, the nerve was already been damaged, hence, my hearing loss. For seven years, I relied on the hearing in my right ear, since I could not hear from my left ear. But after that, the hearing on my right started to get affected the same way.
My balance is also affected because of the location of the tumours in my brain and my left facial nerve is slowly deteriorating, such that half my face is starting to lose its function. I used to be able to work, but since my balance has been affected, I’ve had problems doing my job well.
NF2 has caused my left eye to be dry and I need to apply eye drops regularly. My facial paralysis has gotten more obvious.
In the meantime, as my doctor would like to preserve the good side for as long as possible, they aren’t doing anything to the right side of my face,
“It was a hard decision to make when I wanted to have a child, because I worried a lot about not being able to attend to his needs.”
I now stick with the few friends who are able to accept me and I keep my circle small.
Perhaps it was because of hormonal changes or changes in my blood flow, the tumours actually grew during my pregnancy with Harraz.
Thankfully, I had a smooth delivery, even though I couldn’t take the epidural because of tumours in my spine.
Without my hearing, I couldn’t hear Harraz’s cries when he was a baby. Instead, I had to rely a lot on my sight to know how he was feeling.
When he was an infant, Harraz slept mostly with my mum, so that eased my worries and gave me a sense of relief, even though sometimes, I felt less of a mother. These days, I try to be more involved in his playtime.
I would love to have more kids, but I recently discovered that I have spinal tumours that may put my pregnancy at risk.
“NF2 is hereditary. So, I was, and still am very wary about having any more kids because there is a 50 per cent chance that I can pass on this disorder.”
I also had seizures last month, a side effect of surgery, and have been advised against getting pregnant at the moment.
In addition, NF2 is hereditary. So, I was, and still am very wary about having any more kids because there is a 50 per cent chance that I can pass on this disorder.
I have my bad days but I have to get back up and fight on for him. I also have my close-knit family and friends for support. They constantly encourage me to persevere.”
Photos: Ida Sulaiman
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