Damien from South Australia is married with three children and is a powerful advocate for people with disabilities.
He has Diastrophic Dysplasia, which means he has a particular form of Dwarfism and is unable to walk. Because of the dysplasia Damien’s joints in his hips and legs are constantly locked in a sitting position, so he uses a wheelchair to get around. Damien explains that despite this, he has never really seen himself as disabled and lives a regular life.
“I’m just a little guy that can’t walk. People look at me and go ‘oh your life must suck’ but they don’t know that I’m married with three kids, and a lot of people don’t get that opportunity. I’m grateful for what I do have, not what I don’t have.” – Damien
Damien is a family man, who would do anything for his wife and kids, but just like any other family, they have their own unique story. Damien’s wife Tamara has mild Cerebral Palsy, and the pair married in Las Vegas ten years ago after meeting in their mid-20’s. Despite having her own rehab and therapy appointments, Damien explains that Tamara keeps the family unit running, which is a difficult task for any family with three children. Tayah (12), Blake (10) and Lucas (6) never go without, and despite the chaotic nature of the household, the family have a lot of good times.
“Our kids don’t know any different, I’m their Dad and she’s their Mum and that’s the way it is.” – Damien
Damien remains an extremely optimistic person, and now that his kids are all at school he is enjoying the added quiet around the house. This has given him more time to do what he wants to do as an individual which includes starting his new job working for an organisation that advocates for people with disability and helps them get the most out of their NDIS plans.
“I’ve never been one of those people that hate the world. You can hate the world, or hate God or whoever you pray to as much as you like but it’s never going to change the fact that you are the way you are. You just get on with it and that’s what I’ve always done I guess.” – Damien
However, being home alone has come with some challenges for Damien. Previously there was always at least one of his children around to help him open the door, or turn the lights on. Now, with his wife and children all out during the day Damien was unable to go out during the day, or if he was at home alone into the nighttime he would have to sit in the dark until his family came home.
“There’s no point trying to live independently if you are trapped inside your own house.”- Damien
Aside from wanting to go out for leisure, this also raised a huge safety concern for Damien. Suddenly it became apparent that if there was a house fire, or if someone broke in, Damien would not be able to get himself out of the house safely. This resulted in Damien having to plan two or three days in advance if he thought he might want to go out, to ensure that a carer would be available.
“Sure I’ve got carers or neighbours that I can ring if I need, but I don’t want to rely on people that are living their own lives to come and open my front door. They have their own kids and husbands to look after as well. Ultimately you just don’t want to feel trapped in your own home.” – Damien
Youngcare were able to fund an automatic front door, and an automated lighting system for Damien’s house. This means that Damien is able to leave his house at the push of a button, and control the house lights from his phone or Google device with voice control. Having these two items allows him to live with the freedom to choose when he goes out and also ensures that he can come and go from his house safely. It gives him back his independence.
Without the funding from Youngcare and its supporters, Damien would have been waiting at least 12 months to access funding through the NDIS, during which time his independence and safety would have been compromised. To the people who help fund the grants, Damien is incredibly grateful.
“Thank you. Without you, people like me wouldn’t have quite as much independence as we do. NDIS is great, but it’s still not flawless. As soon as I knew there was another option in Youngcare, I just felt so much happier.” – Damien