Here you'll find a selection of the media coverage from our sister organisation - Usher Kids Australia. If you are interested in generating media coverage here in the UK please use the CONTACT US page to get in touch
that's Life Magazine
January 2017
The January issue of That's Life magazine (Australia) featured Harry and Louis (from Melbourne) on the cover. A great start to 2017, the article hopes to raise awareness for Usher syndrome and our work at UsherKids Australia.
The January issue of That's Life magazine (Australia) featured Harry and Louis (from Melbourne) on the cover. A great start to 2017, the article hopes to raise awareness for Usher syndrome and our work at UsherKids Australia.
australian women's weekly
December 2016
The December issue of the Australian Women's Weekly magazine featured a story about Harry and his parents Hollie and Dan on their quest to find a cure for their son. You can read the full article here:
The December issue of the Australian Women's Weekly magazine featured a story about Harry and his parents Hollie and Dan on their quest to find a cure for their son. You can read the full article here:
Centre for eye research christmas campaign
December 2016
Usher Syndrome was the focus for Centre For Eye Research Australia's 2016 Christmas appeal featuring Harry and Louis. We hope their amazing artwork and story will inspire further donations to fund the Centre’s ongoing research.
Usher Syndrome was the focus for Centre For Eye Research Australia's 2016 Christmas appeal featuring Harry and Louis. We hope their amazing artwork and story will inspire further donations to fund the Centre’s ongoing research.
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Source Kids Summer 16/17
December, 2016
Source Kids is a quarterly publication that promotes the positive outcomes for children with special needs. In the Summer 16/17 edition, there is a special feature on Usher syndrome and Harry and Louis star on the cover. The artice can be found here. We had so much fun shooting the cover photo at Edithvale Beach and we thank Sandscultping Australia for their efforts in creating the perfect Summer backdrop.
Source Kids is a quarterly publication that promotes the positive outcomes for children with special needs. In the Summer 16/17 edition, there is a special feature on Usher syndrome and Harry and Louis star on the cover. The artice can be found here. We had so much fun shooting the cover photo at Edithvale Beach and we thank Sandscultping Australia for their efforts in creating the perfect Summer backdrop.
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"why would you want to know?" Child Magazine
November, 2016
The November issue of Child Magazine features an article by parent Emily Shepard on searching for a diagnosis for her son Louis.
The November issue of Child Magazine features an article by parent Emily Shepard on searching for a diagnosis for her son Louis.
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Hawthorn Football Club Create a lasting memory for Harry and louis
September 16, 2016
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OWN THE EQUINOX DAY 23: CITY OF HOPE
September 14, 2016
by Dave Shepard
A diagnosis of Usher syndrome will spark many emotions and generate differing responses from different people. The story that follows is an attempt to show how an approach based on hope can achieve so much while an approach based on fear will achieve very little. UsherKids Australia was born from hope and the desire to make the journey through diagnosis and treatment easier for the families that will follow in our path. This year as part of Usher Syndrome Awareness Day, UsherKids Australia is hosting an event at the Royal Children’s Hospital in Melbourne. The event will bring together families and medical specialists for the first time ever in Australia. Those unable to attend will be able to stream it live. The Usher Community in Australia has never been so connected and this is an excellent chance for us to build our knowledge and our hope together.
Enjoy the story.
The City of Hope
Emily was worried. ‘There’s nothing anyone can do for our son here’ she said. ‘I have to get to the big city to find the people who know about his condition and know what to do’.
‘Come with me’, she said to her husband. ‘No I can’t, I’m scared, what if they can’t help?’ he said. ‘And people will think you are crazy and you’ll never make it to the city.’
The path to the city was very overgrown, long and winding. Regardless, Emily pushed on and on and after many days made it to the big city. She asked around and spoke to anyone who knew anything about her son’s condition.
She made the long trip home back down the overgrown, long and winding path. But her heart was filled with hope as she had seen all the work that was being done and learnt what she could do to help her son.
Emily worked hard with her son to make sure he could be the best he could be. One day she said ‘I should widen the path to the big city so that it is easier for me to come and go’. ‘And what if there are others with the same condition, I need to let them know what I know’.
‘Come help me’ she said to her husband. ‘No I can’t, I’m scared nothing will come from this’ he said. ‘You know people think you’re crazy to do this, you can’t widen the path.’
Emily was worried her husband may be right but she put up a sign to say why she was working and set about the task of clearing the trees back from the path. It was hard work and took much time but finally the path was clear and Emily was ready to make the journey to the city again.
As she traveled down the path she noticed someone coming along behind her. The stranger came up and said ‘Hi, my name is Hollie, can I come with you to the city?’
‘Of course’ said Emily and they traveled together. They learnt a lot on their visit and their hopes increased. They were very excited to share the news when they got back home.
Emily and Hollie were full of hope and continued to work hard with their sons. ‘Let’s pave the path’ they said ‘to make it easier for those who wish to follow’. Emily asked her husband to help. ‘No, I’m scared that nothing will come from this’ he said, ‘People say you are crazy and there’s no way you can pave the path’.
Emily and Hollie had never paved a path before. Emily’s worries crept back in but together they found out how to do it and worked very hard. It was slow and difficult work but as they worked Emily’s worries lessened and finally the path was fully paved and they were ready to make the journey to the city again. This time as they set out on the journey they noticed some people waiting to follow. ‘Can you show us the way to the city?’ they asked.
So the group traveled together to the city and learnt much. By now there were so many of them, they started to change the views of the people in the city. Suddenly they could see that something desperately needed to be done to change the future for these children.
Emily was very excited when she got home but her husband had not been on journey and he was still fearful.
Emily could see the positive impact she was having. She knew she was doing the right things with her son to help him develop. Now she was able to buy a car and travel to the city on the road she had paved as regularly as she wanted. The people in the city wanted to work together with her and Hollie and to learn more from each other. More people were finding the path and a strong community was forming.
Emily took her family for a walk to the start of the path. She smiled as she looked down her paved path that took her to the city of hope. ‘I’ve built a road that can get us to the city whenever we want, people there are working for us. Look at our son, he is happy and healthy and has a good life, because of my hope. ’
Emily’s husband looked at their son, then he looked at the path his wife had built and the people travelling on it. ‘You have done so much’ he said. ‘You have changed the world because of your hope and hard work. I’m not scared anymore. Next time you go to the city I’m coming with you’.
They stood together and looked down the path towards the city of hope and could see only a bright future ahead.
by Dave Shepard
A diagnosis of Usher syndrome will spark many emotions and generate differing responses from different people. The story that follows is an attempt to show how an approach based on hope can achieve so much while an approach based on fear will achieve very little. UsherKids Australia was born from hope and the desire to make the journey through diagnosis and treatment easier for the families that will follow in our path. This year as part of Usher Syndrome Awareness Day, UsherKids Australia is hosting an event at the Royal Children’s Hospital in Melbourne. The event will bring together families and medical specialists for the first time ever in Australia. Those unable to attend will be able to stream it live. The Usher Community in Australia has never been so connected and this is an excellent chance for us to build our knowledge and our hope together.
Enjoy the story.
The City of Hope
Emily was worried. ‘There’s nothing anyone can do for our son here’ she said. ‘I have to get to the big city to find the people who know about his condition and know what to do’.
‘Come with me’, she said to her husband. ‘No I can’t, I’m scared, what if they can’t help?’ he said. ‘And people will think you are crazy and you’ll never make it to the city.’
The path to the city was very overgrown, long and winding. Regardless, Emily pushed on and on and after many days made it to the big city. She asked around and spoke to anyone who knew anything about her son’s condition.
She made the long trip home back down the overgrown, long and winding path. But her heart was filled with hope as she had seen all the work that was being done and learnt what she could do to help her son.
Emily worked hard with her son to make sure he could be the best he could be. One day she said ‘I should widen the path to the big city so that it is easier for me to come and go’. ‘And what if there are others with the same condition, I need to let them know what I know’.
‘Come help me’ she said to her husband. ‘No I can’t, I’m scared nothing will come from this’ he said. ‘You know people think you’re crazy to do this, you can’t widen the path.’
Emily was worried her husband may be right but she put up a sign to say why she was working and set about the task of clearing the trees back from the path. It was hard work and took much time but finally the path was clear and Emily was ready to make the journey to the city again.
As she traveled down the path she noticed someone coming along behind her. The stranger came up and said ‘Hi, my name is Hollie, can I come with you to the city?’
‘Of course’ said Emily and they traveled together. They learnt a lot on their visit and their hopes increased. They were very excited to share the news when they got back home.
Emily and Hollie were full of hope and continued to work hard with their sons. ‘Let’s pave the path’ they said ‘to make it easier for those who wish to follow’. Emily asked her husband to help. ‘No, I’m scared that nothing will come from this’ he said, ‘People say you are crazy and there’s no way you can pave the path’.
Emily and Hollie had never paved a path before. Emily’s worries crept back in but together they found out how to do it and worked very hard. It was slow and difficult work but as they worked Emily’s worries lessened and finally the path was fully paved and they were ready to make the journey to the city again. This time as they set out on the journey they noticed some people waiting to follow. ‘Can you show us the way to the city?’ they asked.
So the group traveled together to the city and learnt much. By now there were so many of them, they started to change the views of the people in the city. Suddenly they could see that something desperately needed to be done to change the future for these children.
Emily was very excited when she got home but her husband had not been on journey and he was still fearful.
Emily could see the positive impact she was having. She knew she was doing the right things with her son to help him develop. Now she was able to buy a car and travel to the city on the road she had paved as regularly as she wanted. The people in the city wanted to work together with her and Hollie and to learn more from each other. More people were finding the path and a strong community was forming.
Emily took her family for a walk to the start of the path. She smiled as she looked down her paved path that took her to the city of hope. ‘I’ve built a road that can get us to the city whenever we want, people there are working for us. Look at our son, he is happy and healthy and has a good life, because of my hope. ’
Emily’s husband looked at their son, then he looked at the path his wife had built and the people travelling on it. ‘You have done so much’ he said. ‘You have changed the world because of your hope and hard work. I’m not scared anymore. Next time you go to the city I’m coming with you’.
They stood together and looked down the path towards the city of hope and could see only a bright future ahead.
OWN THE EQUINOX DAY 17: WHEN THERE IS MORE THAN ONE VOICE
September 8, 2016
by Hollie Feller
Daniel and Hollie Feller are the parents of Harry Feller, aged 5 with USH 1F. He is their third child, following Tess aged 13 and Alice aged 10. They all live in Melbourne, Australia, the home of the cochlear implant invention. Hollie co-founded UsherKids Australia in February 2016 with Emily Shepard, another Melbourne USH Parent. They have created a support and education network for families with children with Usher syndrome in Australia. Harry was diagnosed through genetic testing when he was 3 years old.
Harry's Journey
Three years ago we read an article in the local Herald – Sun newspaper about a 3-year-old boy experiencing a helicopter ride to build up a visual image bank because he was losing his sight. This little boy was also profoundly deaf and had cochlear implants. He had just been diagnosed with Usher syndrome, which we discovered via Google is the leading cause of deaf-blindness in the world.
When we read this article it stirred something in my husband and he didn’t sleep for sometime with the worry that this may be the cause of our son Harry’s deafness. Was it just a coincidence that this little boy also had bad balance and didn’t walk till he was nearly two and a half? Or was it simply just parental gut instinct that led us to push for an answer.
The process to find out if it was actually the cause was not easy. It is not straightforward to request genetic testing in Australia for kids, simply to be able to put to bed our fears about a rare condition that we had a 1:650,000 chance of having given to our child. The cost is just too prohibitive and so we were asked to jump over many hurdles and be downright pushy to get the testing approved. In 2013 the cost for testing the most common 90 genes that cause deafness was several thousand Australian dollars. The test was only done in the USA, as Australia didn’t have the facility to test economically at this point. This is no longer the case. In the last three years the price has halved and it can now be done easily and efficiently in Australia.
We were given a confirmed diagnosis of Usher syndrome type 1F on Rare Diseases Day (how about the irony in that?) late Feb 2014. In July that year, I travelled to Boston with the family to the conference held by the Usher Syndrome Coalition. I was still extremely raw with the diagnosis at this stage but looking back the fact that this once every 4-year event was happening four months after we had our confirmation was more than fortunate. Attending this event brought me clarity and most importantly real hope for Harry’s future. The focus was on sharing news about the scientific endeavors that geneticists and researchers worldwide were working on to modify the genes that cause the eye disease Retinitis Pigmentosa (RP). It was also amazing to connect with other families going through the same journey.
During this visit I was privileged to have a chat with one of the lead scientists. This doctor found the time to sit with me in a quiet corner to answer all my questions whilst many of the other researchers and families were also vying for his time. And when I say a chat, it was close to an hour and a half that I grilled this esteemed man for all the hope he could share about Harry’s future.
When I asked him how he had the patience to spend so much time with the families, he simply responded that if a doctor in his line of work was not prepared to sit still until every question the family needed answering was answered, they should be working on other areas of the industry. This was the mantra he reiterated to those Ph.D. students lucky enough to work with him in the lab.
This doctor shared with me some of his wisdom and his words echo in my thoughts every day as their poignancy was so acute I need to make sure every newly diagnosed family hears them.
The most natural thing you want to do when you get a confirmation that your young child has Usher is to ask, “What can I do?”
When I posed this question, he told me simply to do this:
Go home and enjoy these years with your child, who by all intents and purposes is living the fullest of lives. The cochlear implant has brought him speech and language and the RP has yet to take hold.
He went on to describe the process a parent of an USH child goes through in those early diagnosis days. He spoke about how the first thought that entered your mind when you woke each day was Usher. How the last thing you thought of before you fell asleep was Usher and that in between there were countless times when Usher was confronting you in your waking thoughts.
He compared it to having a plastic bag over your head, stopping your even flow of breath, that for up to 18 months or two years, that plastic bag would remain over your head, but slowly, little by little, month by month, small holes would emerge in the plastic bag to allow some air in and give you a chance to catch your breathe. During these first 18 months more and more small holes would appear to gradually let more air in and eventually the plastic bag would be entirely covered in holes, allowing you to be free to breathe normally. After approximately 2 years Usher would stop becoming your first waking thought and the last thing in your mind as you fall asleep.
by Hollie Feller
Daniel and Hollie Feller are the parents of Harry Feller, aged 5 with USH 1F. He is their third child, following Tess aged 13 and Alice aged 10. They all live in Melbourne, Australia, the home of the cochlear implant invention. Hollie co-founded UsherKids Australia in February 2016 with Emily Shepard, another Melbourne USH Parent. They have created a support and education network for families with children with Usher syndrome in Australia. Harry was diagnosed through genetic testing when he was 3 years old.
Harry's Journey
Three years ago we read an article in the local Herald – Sun newspaper about a 3-year-old boy experiencing a helicopter ride to build up a visual image bank because he was losing his sight. This little boy was also profoundly deaf and had cochlear implants. He had just been diagnosed with Usher syndrome, which we discovered via Google is the leading cause of deaf-blindness in the world.
When we read this article it stirred something in my husband and he didn’t sleep for sometime with the worry that this may be the cause of our son Harry’s deafness. Was it just a coincidence that this little boy also had bad balance and didn’t walk till he was nearly two and a half? Or was it simply just parental gut instinct that led us to push for an answer.
The process to find out if it was actually the cause was not easy. It is not straightforward to request genetic testing in Australia for kids, simply to be able to put to bed our fears about a rare condition that we had a 1:650,000 chance of having given to our child. The cost is just too prohibitive and so we were asked to jump over many hurdles and be downright pushy to get the testing approved. In 2013 the cost for testing the most common 90 genes that cause deafness was several thousand Australian dollars. The test was only done in the USA, as Australia didn’t have the facility to test economically at this point. This is no longer the case. In the last three years the price has halved and it can now be done easily and efficiently in Australia.
We were given a confirmed diagnosis of Usher syndrome type 1F on Rare Diseases Day (how about the irony in that?) late Feb 2014. In July that year, I travelled to Boston with the family to the conference held by the Usher Syndrome Coalition. I was still extremely raw with the diagnosis at this stage but looking back the fact that this once every 4-year event was happening four months after we had our confirmation was more than fortunate. Attending this event brought me clarity and most importantly real hope for Harry’s future. The focus was on sharing news about the scientific endeavors that geneticists and researchers worldwide were working on to modify the genes that cause the eye disease Retinitis Pigmentosa (RP). It was also amazing to connect with other families going through the same journey.
During this visit I was privileged to have a chat with one of the lead scientists. This doctor found the time to sit with me in a quiet corner to answer all my questions whilst many of the other researchers and families were also vying for his time. And when I say a chat, it was close to an hour and a half that I grilled this esteemed man for all the hope he could share about Harry’s future.
When I asked him how he had the patience to spend so much time with the families, he simply responded that if a doctor in his line of work was not prepared to sit still until every question the family needed answering was answered, they should be working on other areas of the industry. This was the mantra he reiterated to those Ph.D. students lucky enough to work with him in the lab.
This doctor shared with me some of his wisdom and his words echo in my thoughts every day as their poignancy was so acute I need to make sure every newly diagnosed family hears them.
The most natural thing you want to do when you get a confirmation that your young child has Usher is to ask, “What can I do?”
When I posed this question, he told me simply to do this:
Go home and enjoy these years with your child, who by all intents and purposes is living the fullest of lives. The cochlear implant has brought him speech and language and the RP has yet to take hold.
He went on to describe the process a parent of an USH child goes through in those early diagnosis days. He spoke about how the first thought that entered your mind when you woke each day was Usher. How the last thing you thought of before you fell asleep was Usher and that in between there were countless times when Usher was confronting you in your waking thoughts.
He compared it to having a plastic bag over your head, stopping your even flow of breath, that for up to 18 months or two years, that plastic bag would remain over your head, but slowly, little by little, month by month, small holes would emerge in the plastic bag to allow some air in and give you a chance to catch your breathe. During these first 18 months more and more small holes would appear to gradually let more air in and eventually the plastic bag would be entirely covered in holes, allowing you to be free to breathe normally. After approximately 2 years Usher would stop becoming your first waking thought and the last thing in your mind as you fall asleep.
I returned with renewed vigor and a strong sense of hope. I knew that we could do better than we were doing in Australia to identify Usher syndrome in young children and support other families through the education of key clinicians across the country. I can’t begin to tell you how many specialists told us we were crazy to think Harry was going to get this diagnosis. Comments along the lines of, “Many deaf kids have balance issues”…. “many deaf kids don’t walk until much later”…. echoed through the halls of doctors rooms we visited.
It was simply that in their careers these cases never emerged, the stats didn’t add up in a small population like Australia. Traditionally USH was identified when the children started tripping over their pets in their teens, not via genetic testing that categorically confirmed its presence.
I hold no issue with what was said by these clinicians before the diagnosis, but I knew we could change things. We could change things because now we were two: two families in one region with all the same doctors. We had the power of our voice to advocate for all families with kids with USH in Australia. And so UsherKids Australiawas born in Feb 2016 as a support network for all families in Australia to find information and unite under one banner for awareness and a cure. Please review - http://www.usherkidsaustralia.com
But that’s not where it stops; in fact we are just at the starting blocks. Since the launch of UsherKids website this year we have 10 families, not just two, who are united. Those with the syndrome range in age from 9 months to 16 years, covering both Usher 1 & 2.
We have coordinated to bring them together (some virtually and some in person) at an event for Usher Syndrome Awareness Day on September 17th where we have all of our clinicians and doctors joining us, along with researchers from the Centre for Eye Research Australia to talk about what science wants to do for inherited eye diseases. We also have Mark Dunning as our keynote speaker, which we’re all a little bit excited about.
So, in three years we have moved from being comfortably happy as parents of a deaf child, to distraught in finding out it wasn’t the full picture, to rising against the wave and forming a network to support our families and as many others as we can find within our meagerly populated country to navigate a path that leads to the cure for Usher syndrome in our kids.
This is not a part of the journey we had signed up for, but we are in for the whole ride.
All we ask is if you can support us in any way that you can. Share our feeds, help create awareness.
Usherkids is on:-
Instagram @usherkidsaustralia
and twitter @usherkids
Harry’s Ears our personal blog is now on:-
Instagram @Harrys. Ears
and at www.harrysears.com
It was simply that in their careers these cases never emerged, the stats didn’t add up in a small population like Australia. Traditionally USH was identified when the children started tripping over their pets in their teens, not via genetic testing that categorically confirmed its presence.
I hold no issue with what was said by these clinicians before the diagnosis, but I knew we could change things. We could change things because now we were two: two families in one region with all the same doctors. We had the power of our voice to advocate for all families with kids with USH in Australia. And so UsherKids Australiawas born in Feb 2016 as a support network for all families in Australia to find information and unite under one banner for awareness and a cure. Please review - http://www.usherkidsaustralia.com
But that’s not where it stops; in fact we are just at the starting blocks. Since the launch of UsherKids website this year we have 10 families, not just two, who are united. Those with the syndrome range in age from 9 months to 16 years, covering both Usher 1 & 2.
We have coordinated to bring them together (some virtually and some in person) at an event for Usher Syndrome Awareness Day on September 17th where we have all of our clinicians and doctors joining us, along with researchers from the Centre for Eye Research Australia to talk about what science wants to do for inherited eye diseases. We also have Mark Dunning as our keynote speaker, which we’re all a little bit excited about.
So, in three years we have moved from being comfortably happy as parents of a deaf child, to distraught in finding out it wasn’t the full picture, to rising against the wave and forming a network to support our families and as many others as we can find within our meagerly populated country to navigate a path that leads to the cure for Usher syndrome in our kids.
This is not a part of the journey we had signed up for, but we are in for the whole ride.
All we ask is if you can support us in any way that you can. Share our feeds, help create awareness.
Usherkids is on:-
Instagram @usherkidsaustralia
and twitter @usherkids
Harry’s Ears our personal blog is now on:-
Instagram @Harrys. Ears
and at www.harrysears.com
Harry's Train Rides
Harry is obsessed with trains. As part of a month long social media campaign in the lead up to Usher Syndrome Awareness Day on the 17th September, Harry (with his parents Dan and Hollie) will post a pic from a different train station in and around Melbourne, Australia every day for the month.
To support Harry, post a pic of yourself at any train station. Use the Hashtags #USHEQX and #usherkidsaustralia
To read more about Harry's story, visit Harry's Ears
To support Harry, post a pic of yourself at any train station. Use the Hashtags #USHEQX and #usherkidsaustralia
To read more about Harry's story, visit Harry's Ears
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Herald Sun
Louis and Harry were featured in the Herald Sun Newspaper in Melbourne on 27th August 2016. You can read the full article here :
Melbourne pair's friendship helps spawn UsherKids Australia support group
Melbourne pair's friendship helps spawn UsherKids Australia support group
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genetic support network of victoria
The Winter 2016 edition of the Genetic Support Network of Victoria newsletter features an article written by Emily Shepard about the establishment of UsherKids Australia. You can read the full article here : https://www.gsnv.org.au/media/277488/gsnv_newsletter_winter_2016.pdf
