Belinda D’Amico is a full-time mum and carer to her two young sons, who were born with Fragile X Syndrome, a genetic condition that can result in various developmental difficulties.
The year 2020 changed a lot for Belinda and her family. Her oldest son Jaxon was diagnosed with Fragile X Syndrome and her newborn son Alex was given the same diagnosis. Fragile X Syndrome delays the boys’ fine motor skills, strength and physical development, coordination and cognition.
The start of Belinda’s care journey was filled with research on Fragile X Syndrome. “I wasn’t just educating myself; sometimes I was educating the doctors and therapists too,” she says. “We faced a lot of waiting lists. There were a lot of people putting my children into a ‘one-size-fits-all’ box and I knew that wasn’t right. I want to be able to do the most I can for my boys and someday help other kids and parents who are living with Fragile X Syndrome. From my own family’s journey, I know early intervention can really change the outlook of a child’s life.”
In the long-term, Belinda hopes Jaxon and Alex will be able to live together independently of their parents. The family is seeing results of the boys’ intensive therapies and is proud of what they are achieving. “The most rewarding part of our journey is when the boys are laughing and happy together,” she says.
When Belinda found Carer Gateway, she found a range of support that focused on her. “You don’t know what you don’t know,” she says. “And you don’t need to know everything right now. The great thing about Carer Gateway is you can start by just talking with someone to learn what’s on offer to help you.”
“Carer Gateway’s tailored support packages and counselling are resources every unpaid carer should have in their back pocket,” says Belinda. “Personally, these services, along with the respite support, give me the greatest peace of mind.”
Did you know?
- There are more than 2.65 million unpaid carers in Australia. That’s one in nine people.
- Two thirds of carers spend up to three hours a day providing care and support.
- Just over half of all carers are primary carers. That means they’re the only person looking after the person they care for.
Are you a carer?
A carer looks after someone who lives with disability, has a medical or mental health condition, or is frail due to age. Every caring situation is different, and a carer can be young or old. A carer might look after someone 24 hours a day and help with daily activities, or they might look after someone who only needs help some of the time.
If this sounds like you, you might be an unpaid carer.
It is important to have support when you are caring for someone. Carer Gateway was designed by carers for carers. They provide a range of free services and support to give carers the help they need.
Photographer: Nicole Paton