Maggie is eighteen years old and finished high school in 2020. She loves sport and spending time with her friends. Maggie was diagnosed with deafness at eight months of age, after many months of her mother, Bronwyn, telling medical professionals that she believed Maggie was deaf. Maggie was then fitted with a cochlear implant at twelve months and, at six years old, she needed her first pair of glasses. However, it wasn’t until an optometrist referred Maggie to a specialist at fourteen years old, that she was diagnosed with Usher Syndrome.

Bronwyn described both the diagnosis process and medical support to be inadequate and frustrating. From the specialist who diagnosed Maggie without warning or support, to subsequent appointments with medical professionals, the family felt unsupported and uninformed. They were not told the impact the diagnosis may have on Maggie, with most of Bronwyn’s information about Usher Syndrome coming from the internet. The lack of integration between different medical professionals and services was also challenging to navigate.

“Always do your own research and you have to become the expert if you’re going be the best advocate”

Maggie said it took quite a while to come to terms with her diagnosis, and that she is unsure if she is yet to fully accepted it. From a young age, Maggie has found participating in sports to provide her with many opportunities, including making social connections. She is even trialling for the Paralympics in rowing and triathlon. Bronwyn agrees, saying sport has been an unexpectant positive and is the most organised of all activities aimed at children with deafness.