The Feller Family

The Feller Family

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 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 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. ”

Three siblings sitting on the ground looking at the camera smiling. The youngest has cochlear implants.

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

“He never thinks that he can’t do something because he’s got Usher syndrome. He doesn’t see it as something that limits him.”

Hollie and Dan found early intervention services to be a huge help in improving Harry’s vestibular functioning. Physiotherapy, occupational therapy and gymnastics have all been beneficial. Hollie recommends searching for professionals who you trust and who work well with your kids. Having a network of other parents who can provide recommendations can be hugely beneficial in this process.

Hollie wishes others, particularly teachers, understood the impact dual sensory loss and balance dysfunction has on Harry day to day. Even though he may be doing extremely well, it does not mean that he doesn’t face additional challenges or isn’t trying hard to do well. She encourages parents to never second guess themselves when advocating for their children or feel that they are overemphasising the difficulties the kids may face. Hollie wants parents to remember that they are advocating for the hardest days the kids have, not the average or good days. She also believes it is important to organise time alone with other siblings.

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