Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants. However, Bronwyn believed there was more going on, as Eamon was having difficulties with his balance. It wasn’t until Bronwyn and Andrew underwent genetic testing themselves when Eamon was three and Kealan was two, and two letters later, that the boys were diagnosed with Usher syndrome Type 1D. Bronwyn said they received one letter informing them that there was no genetic cause to the boy’s deafness, only to receive another two weeks later, confirming that the boys had Usher syndrome.
"That was just a horrible, horrible couple of months.......I couldn't cope..... I thought this is just too much for us."
However, despite this extremely challenging way of receiving a diagnosis and a few unhelpful doctors, Bronwyn was able to bring together a team of professionals to support the boys. She found ophthalmologists with expertise in Usher syndrome, as well as psychologists and occupational therapists through speaking to other families of children with Usher syndrome. All these people came together to tell Eamon and Kealan about the syndrome and what they may experience as they grow up. The family has always been transparent with the boys about the syndrome and have found this strategy to really work for them and helped them prepare for vision loss.
"The boys are beautiful advocates for people with vision impairment. They will tell anyone who wants to know why they use a cane."
Open communication between the family has helped Eamon and Kealan become advocates for themselves as well as others with Usher syndrome. In 2019, Eamon spoke in front of Parliament in Canberra about Usher syndrome and is a 2020 Telethon ambassador. Bronwyn encourages others to get their kids involved in things like sports and social activities early on. The family have also found it helpful to begin cane training whilst the boy’s vision is still good, so they can call on this skill easier down the track.
Bronwyn encourages parents to get in contact with other parents within the Usher community, as they can be fantastic sources of support and knowledge for managing the NDIS and finding supportive medical professionals.