Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program. As Harry grew, he did not meet his gross motor milestones on time. After seeing Emily (co-founder of UsherKids Australia) and her son Louis in the paper, Dan began to suspect that Harry may also have Usher Syndrome. After a number of genetic tests and a lot of waiting, Harry was diagnosed with Usher Syndrome Type 1F at two and a half years old.

The diagnosis was a massive shock for both Hollie and Dan, but they were somewhat comforted by having connected with Emily and knowing there was another parent who had a similar experience. Hollie highly recommends reaching out to other parents, not only for emotional support, but so they can share helpful tips. She also found Facebook pages to be helpful some of the time.

“Every day you will wake up and the first thing you’ll think of is Usher syndrome. Every night you go to bed and the last thing you think of will be Usher syndrome. One day you’ll wake up and it won’t be the first thing you think of, and it won’t be the last thing you think of. You just need to make that happen as quickly as you can, so you don’t miss out on enjoying their childhood with them.”

Hollie and Dan chose not to discuss Harry’s diagnosis with him and his older sisters for three years. They feel that they needed to fully understand the diagnosis, what it meant for Harry and have a more positive outlook for him, before letting their kids know. This approach really worked for their family and the kids accepted the diagnosis well when they were told.