Monthly Archives: September 2016

I really didn’t think this through. That is, the impact of sharing with the world the news we had hidden for quite some time. Hiding made it seem more like a dream, one that you could wake up from and easily face the day knowing it wasn’t truly there confronting you . That was obviously inaccurate but without having to talk about it day in and day out, I was able to compartmentalise it and store it away for the moments when I really had to deal with it. And day-to-day Harry mostly lives the same type of life as a typical 5 yr old boy. It is punctuated with many additional appointments, and we have to be vigilant with his health and not taking our eye off the ball when he attempts new physical activities, but he knows his limits and so do we and that works.

But now it is different as I am no longer dreaming – it is just our reality.  I have told my readers, all the family, our friends and colleagues that Harry’s deafness was a result of Usher syndrome and now we have to get out there and tell the world this condition exists and help raise awareness to help fund a cure.

Last year I sat on the wings as the family and friends of the Usher Community helped spread awareness through a campaign linked to the Autumnal Equinox.

‘Own the Equinox’- it is called- and it sought to tie into the Northern Hemisphere’s Autumnal Equinox when daylight and darkness hang in perfect balance, the moment before the northern hemisphere slips into darker days. It is a wonderful metaphor for Usher syndrome and the state of Usher syndrome research.

The campaign focuses on social media posts for 26 days in the run up to the Autumn Equinox which was written in the US Congressional Record last year as Usher syndrome Awareness Day. Some people posted walking a mile- a -day, running their first 26 mile marathon and many other feats to raise awareness. I knew that wasn’t for me. I hate running and I never walk and there was no way I’d get Harry walking every day for a month. I had to come up with something that meant a lot to him and represented the journey we were all on.

So  it is that ytime of year again and we are out on the stage with everyone else. We are doing #atrainrideaday, all over the MetroTrainsMelbourne network covering many of the stops that take us to the appointments we have to undertake to manage Harry’s Usher syndrome. That is our current journey. We’ve injected some fun into our contribution to build awareness and have asked all our social media friends to take a picture of themselves at their local train station and hashtag #USHEQX and #UsherKidsAustralia.  We have reached places like Tokyo, Cameroon, Paris, London, New York, Wagga Wagga, Chicago, Hong Kong and I don’t want it to stop there. I know it is not the Ice Bucket challenge but there is no reason this can’t go “viral”. If everyone we know manages to take a photo of themselves at a train station (remembering to click public on the post setting) and their friends , and friends of friends do the same, we will reach all corners of the globe . Our voice will tell the world that Usher syndrome exists and we want to cure blindness for every inherited eye disease.  I urge you to join in on instagram@usherkidsaustralia and @harrys.ears or your own FB page using the hashtags so we can see what you’re doing. Just remember to make your post setting public.

Next week Metrotrains Melbourne have promised to get on board ( excuse the pun!) .This is the story of a 5 yr old boy who was born deaf and is now speaking and hearing as well as his peers as a result of the cochlear implant. He loves trains. He is obsessed with trains and can’t think of anything better to do every day than jump on a train, even one stop and help us promote awareness. He will lose his sight if we don’t and then his reality is that he won’t be able to travel unaided on public transport.  As an adult this will mean he will  have to use a white cane and a Guide Dog  and those yellow and blue raised bumps on the platform will be more than interesting colours for him- they will be essential to show him where the safe edge of the platform is.

Last Saturday the Herald Sun covered our story , helping us start the Awareness campaign. It tells of how Harry and Louis as best buddies, living around the corner from each other, were able to share a passion for the Hawks footy team and a rare genetic condition. It was a great article and  here is the link to share.

Herald Sun  Sat 27th Aug 2016

The campaign will culminate on September 17th when UsherKids Australia will hold an event at the Melbourne Royal Children’s Hospital in Flemington for the new network of families who have found us through our website. Attending to support them will be many doctors, allied health practitioners, researchers, geneticists and early intervention teams from around Australia. As many are located interstate we will stream the event live to them and record it to place on our website for those in a different time zone. I never thought we would achieve something as great as this so quickly. It is truly testament to what a combined voice can do to advocate for a better outcome for children with disabilities.

So there you have it.  I am reliving the diagnosis everyday for this campaign as to make it truly an awareness campaign the information needs to be repeated again and again to get to new people. Everyday I am sharing what Harry’s future may look like and how important it is that we change that. How imperative it is that we push research in Australia to find the cure to inherited eye diseases . I know we can do it.