Help my brother 'see' again
Donation protected
When Liam was 13 (now 21) he went for a routine eye test which showed an abnormality. Within days of receiving this information and going straight to hospital, the abnormality - an enlarged blood vessel - had burst which left him with sight in only one eye. He was diagnosed with VHL (Von Hippel Lindau) syndrome which is basically a mutated gene that brings along tumours and cysts in many parts of the body.
We've lost count of how many tests and surgeries he's had on his brain stem, kidney and eyes, the amount of tumours (cancerous/benign) and the amount of MRIs he's had to have. Has he complained? Yes. Has his mental health suffered? Yes. Has he gone through all of this with a smile on his face? You bet.
In February 2018 he had an operation to remove a tumour that had a high chance of leaving him paralyzed or killing him, the doctors said there is a slight chance that wouldn't happen but that it was only small. The stubborn bugger took that as a challenge and proved everyone wrong when he ended up coming out of it being able to walk after continuous physio and a long hospital stay!
In May 2019, less than a week after proposing to his girlfriend, he lost all vision he had left. Although we knew this was happening due to his remaining vision deteriorating, it was a devastating blow and massive adjustment for all of us. The thing that surprised me most was that he was still able to keep working. He is at work anywhere from 4am setting up for the day, making salamis, cleaning and of course, getting up to mischief.
Although having NDIS funding, it is for things that are of no use to him. The one thing he needs is a little device called OrCam MyEye. It's a little camera that clips on to glasses and can tell within a second what is directly in front of the person wearing it. It identifies surrounding objects, reads text, recognizes faces and identify products, all of which would be helpful to Liam. This is something that Vision Australia have trialed on him before so we know it's something that works for him.
Seeing as NDIS are unwilling to help pay for this, my parents have been left with no other option but to pay for it themselves. The quote they got for this life changing camera was just under $8000 which we are determined to get with or without financial help. We are getting a second quote for a newer version that comes out in a few weeks. My parents have been unable to get help from Centrelink at all due to varying, unfair factors.
I made this to hopefully take some of the strain off my parents. Mum works 7 days a week and so did my Dad until health issues meant he could no longer work, so he's Liams full time carer. Any money raised will be going straight towards buying this amazing little device. Even if you aren't able to donate it would mean the world if you shared this on social media. I've added a link to a gentleman who was approved for this and it talks about what it does and how much it has helped him as well as a direct link to the OrCam website which has a few videos where you can see it in action :)
https://www.aruma.com.au/about-us/news-and-media/john-gets-the-job-done-with-the-help-of-wearable-technology/
https://www.orcam.com/en/myeye2/
We've lost count of how many tests and surgeries he's had on his brain stem, kidney and eyes, the amount of tumours (cancerous/benign) and the amount of MRIs he's had to have. Has he complained? Yes. Has his mental health suffered? Yes. Has he gone through all of this with a smile on his face? You bet.
In February 2018 he had an operation to remove a tumour that had a high chance of leaving him paralyzed or killing him, the doctors said there is a slight chance that wouldn't happen but that it was only small. The stubborn bugger took that as a challenge and proved everyone wrong when he ended up coming out of it being able to walk after continuous physio and a long hospital stay!
In May 2019, less than a week after proposing to his girlfriend, he lost all vision he had left. Although we knew this was happening due to his remaining vision deteriorating, it was a devastating blow and massive adjustment for all of us. The thing that surprised me most was that he was still able to keep working. He is at work anywhere from 4am setting up for the day, making salamis, cleaning and of course, getting up to mischief.
Although having NDIS funding, it is for things that are of no use to him. The one thing he needs is a little device called OrCam MyEye. It's a little camera that clips on to glasses and can tell within a second what is directly in front of the person wearing it. It identifies surrounding objects, reads text, recognizes faces and identify products, all of which would be helpful to Liam. This is something that Vision Australia have trialed on him before so we know it's something that works for him.
Seeing as NDIS are unwilling to help pay for this, my parents have been left with no other option but to pay for it themselves. The quote they got for this life changing camera was just under $8000 which we are determined to get with or without financial help. We are getting a second quote for a newer version that comes out in a few weeks. My parents have been unable to get help from Centrelink at all due to varying, unfair factors.
I made this to hopefully take some of the strain off my parents. Mum works 7 days a week and so did my Dad until health issues meant he could no longer work, so he's Liams full time carer. Any money raised will be going straight towards buying this amazing little device. Even if you aren't able to donate it would mean the world if you shared this on social media. I've added a link to a gentleman who was approved for this and it talks about what it does and how much it has helped him as well as a direct link to the OrCam website which has a few videos where you can see it in action :)
https://www.aruma.com.au/about-us/news-and-media/john-gets-the-job-done-with-the-help-of-wearable-technology/
https://www.orcam.com/en/myeye2/
Organizer
Tori Wilcox
Organizer