The Cox Family
Vicki received confirmation that her daughter, India, had profound hearing loss when she was fifteen months old, the day before the birth of their second daughter Samira.
Vicki received confirmation that her daughter, India, had profound hearing loss when she was fifteen months old, the day before the birth of their second daughter Samira. At three weeks of age, Samira was also found to have profound hearing loss. It wasn’t until Samira was ten years old and struggling to see on a low light walk through the Daintree Rainforest that they sought further testing for her eyesight. An ophthalmologist confirmed that the sisters have Usher Syndrome that year.
Vicki began going to different conferences throughout Australia and Internationally to learn more about the syndrome and meet other families. She believes she has received the most useful information from groups like UsherKids Australia and informal support networks such as Facebook pages.
“It’s been good just to have a few families to connect with and have that support. It’s been really valuable.”
Now 21 and 19, India is studying science at university and Samira is studying screen and media at tafe. Being able to advocate for themselves in higher education settings has been important for them to receive the support they need. Samira has found it beneficial to share her story with friends and classmates, so they can be accepting and know how they can help. She also enjoys competing at para-athletics events and being a part of the athletics club.
“We’ve always sort of had you know just set expectations like any other kids that study, do as well as they can at school, go on and pursue whatever they want to. So we always have that expectation that you’ll go out and do things”
Vicki wishes others were more aware of how everyday things can be more challenging and tiring for India and Samira. Whilst friends and family have been supportive, it has been easy for them to forget the little things India and Samira need help with to get by. Vicki believes it is important to be open and honest with loved ones, so they understand the child’s needs and are able to help out.
She also wishes health professionals had more information on the syndrome, so they could provide better support for the families or link them up with appropriate supports.
“Just enjoy the kids, don’t get too caught up in all the therapy and what might happen, you’ve just got to get on with life, make the most of it”
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