Josh struggles with immense pain in his neck with Kyphosis and Atlantal Axial Instability He has Obstructive Sleep Apnoea, requiring him to wear a VPAP machine to sleep. He has a lot of trouble swallowing, and stopped eating due to pain, so he has a PEG through which he is primarily fed. He struggles every day with immense pain due to a Septic infection that almost killed him in 2014.
The damage to Joshy’s internal organs is so extensive, it cannot be fixed. His organs are slowly deteriorating. Every time he gets sick, it is life threatening.
Joshy was born 7 weeks premature. He spends a lot of time in hospital and has had many operations, the first one being when he was just 3 days old. He has had 54 operations. From his very first ultrasound they never expected him to survive another 2 weeks, let alone to be born, and then live!
He has a spirit determined to live and to see the beauty in every day. Joshy is a generous, genuine, loving, caring boy. He is open and honest and welcoming to each and every person he meets.
He has been homeschooled, can read and add up. He loves to go horse riding and spend time with his pets. He loves motorbikes. He loves going to Church and serving as an altar boy. His most favourite thing to do is to see bands perform live.
Since an infant we have run courses in schools, businesses, churches, and hospitals, teaching them about disabilities, with Joshy being instrumental in the classes and practicals. We have run program’s giving work experience to senior students for years with Joshy helping them learn how to understand disabilities. He helped in the Playgroup we ran for 10 years. He has been involved in teaching doctors about disabilities for 16 years. Joshy has been on the floats in the parade every year, started the Disability Action Week poker run every year, contributed art in local exhibitions (winning awards), been in a documentary about living with disabilities, featured in many ad campaigns and calendars for awareness raising for disabilities, Ronald McDonald charities and the Australian Koala Foundation.
When out raising awareness, he is right beside me, shaking hands, introducing himself and promoting our cause. He has completed the ms readathon 10 years in a row. He has volunteered with me at the local institution for the last 12 years supporting adults with disabilities. He cares for he the injured wildlife we rescue. He brothers the foster children we support. He is a hardworking roadie at all our concerts we organise for charity.
Through the way he lives his life, and shares it with me, you and the rest of the world, he is breaking down barriers and stereotypes everywhere he goes. He is instrumental in our advocacy work. He has been the inspiration behind articles I have written in a number of disability and other magazines and many of the projects I do.
Although he spends a lot of time in hospital or being bed ridden, when he is well enough, he is out there, being a part of the community and sharing his love and life.
Thank you joining us along this journey xx