Nov 2017 Daily Mail Australia

The mother of a child born with significant hearing loss in both ears due to a genetic disorder has revealed how therapy and surgery have transformed her daughter's life.
Mel, of Gymea, is mum to Charlie, a bright, bubbly three-year-old who was born with profound hearing loss.

CharlieCharlie and MelTests just days after baby Charlie was born revealed she was deaf. Follow-up testing at Sydney's Children's Hospital confirmed Charlie was hearing impaired. 'The day we were told Charlie was deaf, our whole world was turned upside down. We had no knowledge or experience of deafness but we knew instantly that will would have a huge impact on our lives,' Mel said. 'It was so shocking and devastating. We didn't know anyone who had been through this. It was all very different to anything we'd experienced.' 

Mel and her partner Ben, are carriers of the Connexin 26 gene, a recessive gene which is the most common cause hearing impairment. 'My husband and I are both carry the gene but because we both have the good copy as well, the good always over-rides the bad copies, which is why our hearing is fine. 'Charlie was born with both our faulty copies.' 

Within weeks of Charlie's diagnosis she was given her first set of hearing aids, and at three months old she started audio verbal therapy to help teach her to listen and speak at the Shepherd Centre in Newtown. Despite weekly sessions, the family realised Charlie wasn't doing as well as she could have been and a decision was made for her to have the first of her two cochlear implant surgeries. Her first surgery was at 16 months, and her last just after she turned three.

Though Charlie continues to have regular therapy, her mum Mel said her progress has been nothing short of  'astounding'
'It's been such a long journey and finally it's all coming together and we are seeing really great progress. Charlie, who will turn four this December, is now a confident girl 'that will just walk into a room and want to make friends’ 'Whereas before she was a little bit unsure and would stand back, now she just sort of runs to join in and it's amazing to see.'

CharlieNow Charlie will bring a little hope to others who may be affected by hearing loss as the new face for the Shepherd's Centre 2017 Christmas Appeal. 'They do that for all the families,' she said.
'You have your little baby and you just want them to be perfectly healthy so when something happens its quite unknown and scary.'

The centre is aiming to raise $150,000 to provide support services for families with deaf or hearing impaired children. While the Shepherd Centre is NSW-based, funding will help children who are deaf and hearing-impaired develop spoken language skills in ACT and Tasmania. 'There are so many ups and downs with the journey, and they've always been there for us,' Mel said of the centre's work The charity, which was founded in 1970, has since helped more than 2000 children.

Jim Hungerford, CEO of The Shepherd Centre said many people don't realise it costs nearly $20,000 per child a year to provide services. 'Sadly, we know that currently only 50 per cent of Australian children with hearing loss are being supported by specialised early intervention services.
'Every child deserves the chance to reach their full potential regardless of disability.'


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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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