Shelley and Will found that their son, Noah, had moderate to severe hearing loss through the newborn screening program. They describe the first year or so of Noah’s life as being quite full on, as they learned to navigate the medical system, attended different appointments and tried to find answers. When Noah was two, and with Shelley pregnant with their second child, the family was told Noah has Usher Syndrome, Type 2A.
In the year after receiving the diagnosis, Shelley and Will have used social media and UsherKids Australia to find others with Usher syndrome who are thriving and doing well in life. They both found this to be very beneficial to them, finding comfort in seeing others who have lived through what are currently going through.
“So now that we know, it is for me, much easier to navigate. There’s less questions, there’s less questioning.”
Shelley and Will are now looking toward Noah’s future. They think it will be important for Noah to understand what the future may hold for him and they plan to discuss Usher Syndrome with him when he is able to understand. They hope to involve him in the deaf community, so Noah can be around other kids who may face similar experiences to him.
“We want Noah to be proud of who he is, and that he’s doing an amazing job... but he does have challenges”
Shelley and Will’s team recommended against going down the rabbit hole of googling everything to do with Usher syndrome, and they encourage other parents to do the same and stick to official websites. They also suggest that parents build a team of professionals that they trust and can rely on, as their support is incredibly important. For friends and family of those with Usher syndrome, Shelley and Will recommend being a listening ear that parents can go to without judgement.