Navigating the journey
The Mardania family has traveled from Nairobi, Kenya to Perth, Australia, to seek the best possible support for their daughter Nena.
When local doctors in Kenya informed Neetal Mardania that her 18-month-old daughter’s hearing was “perfectly fine”, she simply couldn’t accept the diagnosis. Call it gut feel or mother’s intuition, but Neetal was convinced that Nena’s hearing was compromised.
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“She wasn’t responsive when we spoke to her and didn’t react to loud noises,” she explains. “I just knew, deep inside, that something was not right.”
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Neetal travelled almost 500 kilometres from the family home in Mombasa to the country’s capital, Nairobi, to seek a second opinion. The outcome confirmed her worst fears – that Nena was profoundly deaf in both ears.
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“At first I was in shock,” says Neetal. “I didn’t want to believe that it could be true; that I had a deaf child. I had so many questions but very few answers.”
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Around the same time, an armed gang forced their way into the hair salon that Nena’s father Mehul owned in Mombasa. This, together with the relative lack of support for Nena they could expect to receive in Kenya prompted the family to make the brave decision to pack up their belongings and embark on a journey across the world. They ended up in Australia, where they settled in the northern suburbs of Perth in December of 2006.
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“It was such an emotional journey, and it was so hard,” explains Neetal. “We left all our family in Kenya. It took a long time to get settled in Australia and find the right supports for Nena. I was pregnant at the time, too, so Mehul was the only one working.
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“While I was at home I did research on the best treatments for Nena, and I came across Telethon Speech & Hearing. I called them up and made contact with Wendy Tunbridge. TSH has been such a blessing in our lives. They introduced us to all the support systems that were available in Australia and we are so grateful for all their knowledge that they shared with us
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“Her first word was ‘baba’. I looked over at my husband, who was in tears – happy tears - and I saw the smile on his face. I remember, at that point, being so grateful for all that God had given me on this earth.”
“They were not afraid to tell us some hard truths too,” she says. “They told us that the journey would be very difficult, but not impossible, and they convinced us that Australia was the best place for Nena and our family. I’m so grateful that they did, because I look back now at how far we’ve come, how much we battled through the last 17 years, and I know that every struggle and every minute was worth it.”
At the age of four, Nena received her first cochlear implant, something that would have been extremely unlikely back in Kenya, with the second coming at the age of six. Neetal recalls the moment the CI was switched on.
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“It was an amazing moment, and it changed our whole world,” she says. “Her first word was ‘baba’. I looked over at my husband, who was in tears – happy tears - and I saw the smile on his face. I remember, at that point, being so grateful for all that God had given me on this earth.”
Although Nena was suddenly able to hear, she had a lot of catching up to do, as her hearing loss had left her with a severe language delay.
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She began an intensive program at TSH and, after a while, TSH’s Josie Hawkins convinced the Mardanias that it was time for Nena to start attending school. She recommended that Nena join TSH’s Outpost program, so that she could benefit from mainstream schooling while enjoying the supports that TSH provides, including teachers of the deaf, note takers, speech therapists, occupational therapists and a psychologist.
Nena attended St Stephen’s School Carramar for her primary school years, where she received language support on a daily basis. At home, Neetal and Mehul continued the support work and Nena made slow, but steady, progress through her school years.
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“Josie also introduced us to other parents who were undergoing a similar journey,” explains Neetal. “That was a real eye opener for us, seeing that other parents were going through the same thing. The parents of TSH are like a community – they even brought us books, toys and clothes when our third child was born.”
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Last year Nena graduated from Servite College and, while she ponders what her future holds, she has begun working at her local KFC.
“Just getting out and working part time has been so good for Nena,” Neetal explains. “She’s been cocooned in the safety net of her family for so long that she needs to get out of her comfort zone and mingle with new people.
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“She has wonderful empathy, and her goal is to get into a career where she works with children. We are working to make that happen and I’m sure it will.
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“If it wasn’t for TSH, Nena would not be anywhere near where she is at right now. I’m so grateful to all the staff there, especially Wendy, Josie, Geoff [Reader] and Megan [Harrop].
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“It has been a very long journey, with lots of tears, joy and laughter – but each and every second has been worth it. Every child that walks into TSH walks out with new strength and a very positive attitude.
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“I’d like to commend and thank the community at TSH for all their hard work, which never goes unnoticed.
We all want the best for our children, but what does Neetal wish for her daughter as she enters this new stage of her life?
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“I want Nena to be happy and confident,” she says. “I want her to make her own decisions and be able to inspire and help others who are walking in her shoes.”
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Thanks to a large support network of family, friends and educators, all of whom have rallied around Nena, she is well on her way to achieving these goals.