Oct 2019 Gisborne Herald

Nemiya Harvey-Downes likes Loud Shirt Day. That’s the annual fundraising and promotional appeal dedicated to raising money for deaf children with cochlear implants or hearing aids. Nemiya, aged eight, can now hear better that he ever has because of his cochlear implants. They have made a huge difference to his life, said his mother Jodie Downes. “He is now able to hear sounds he hasn’t heard for years.”

nemiya Nemiya Harvey-Downes with mother Jodie Downes

Nemiya’s hearing difficulties were noticed from his very first days. Grommets were tried at the age of one when Nemiya had mild hearing loss. But his hearing deteriorated which made school a difficult experience. “Those first few years were hard on, not only him, but his teachers,” said Jodie.

“He would struggle to pay attention and often ran out of class. Nemiya couldn’t work in a group and would disrupt all the kids and would often choose to play alone as he couldn’t understand what the kids were saying half of the time.”

Funding from the Ongoing Resourcing Scheme (ORS), which supports students with severe or profound hearing impairment made a significant improvement to Nemiya’s quality of life. ORS paid for a carer to be by his side at school and give him one-on-one support. It was the support he needed, said Jodie. “His speech was getting so bad you couldn’t understand what he was saying.

He could speak Maori a lot clearer than English as he couldn’t hear a lot of the high-pitched sounds in English and Maori has less of that, so it was easier for him to hear and pronounce words.’’

But Nemiya’s hearing continued to deteriorate. “It was around the age of 5 that we noticed it big time. He was becoming profoundly deaf so we had no option. It was cochlear implants or your child slowly going completely deaf!” Nemiya went to Christchurch and met Doctor Phil Bird. “He was amazing,’’ said Jodie. Nemiya required two operations, but the change was transformational.

“We couldn’t begin to imagine how life would be for him now without them,” said Jodie.“His speech has improved so much, he is now able to hear sounds he hasn’t heard for years. He is starting to understand language so much more and is more sociable with other children now.”

The implants don’t work over night, she said. “It is a lot of hard work and habilitation in Wellington with speech therapists and audiologists, but also at home where we go back to the basics of helping him understand language and pronounce words that he has not heard for so long. It’s about us at home working hard as a family and giving him the support that he needs, day in and day out, because the implants take time. You have to train your brain to hear a different way but once they get it, they are away!”

Jodie said she was grateful for the system funding “life-changing implants for deaf children here in New Zealand as each implant operation is around $50,000 each year. “To be given these as a free option here in New Zealand is breathtaking and life changing for a deaf child and their family.”

The Ministry of Health funds cochlear implant services for people with severe to profound hearing in both ears who meet all certain criteria. Children are given priority. Jodie said she wanted to give “a big shout out” to Christchurch Hospital for all their help and support. “Dr Phil Bird did such an amazing job both times — best surgeon ever. Thanks also to the Wellington team for all the habilitation and effort you have put into, not only Nemiya, but many other children to help make a difference in their life. I couldn’t be more thankful for you all.”

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Here is a link to Deafblindness support and information.
They are based in Western Australia and supported by Senses Australia.

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