From childhood memories carer at Very Special Kids

Mandy Lobley remembers fundraising to fill pink pigs at school, but little did she know the fond memories she had of ‘the pig charity’ would later become such a big part of her life.

In conjunction with her role as carer in the hospice Mandy is studying genetic counselling at the University of Melbourne, and is what led her back to Very Special Kids.

Genetic counselling is a very specialised profession, and only two universities in the country offer a degree in it.

“It’s basically medical translating. When a family receives a genetic diagnosis, we can assist them to understand the clinical jargon, health risks, treatments and create plans for their family’s future. That’s the “genetic” part. The counselling bit comes into play when this information is distressing and patients or family members may experience uncomfortable emotions, we can help work through them and provide clarity,” Mandy said.

Due to the nature of her study, Mandy, along with her fellow students, were encouraged to become volunteers within a community organisation. The University recommended Very Special Kids and, as soon as she remembered it was the organisation that was part of her childhood nostalgia, she didn’t hesitate.

“I started volunteering in 2016 as a fundraising volunteer, but with hopes to become a hospice volunteer. While waiting for a training opportunity to volunteer in the hospice I learnt to tow the big pigs with pride, run merchandise stalls, and I even held my own fundraiser. But I always knew volunteering in the hospice was where I wanted to end up,” she said.

She did eventually complete the training to become a hospice volunteer, and fast-forward to 2019, she transitioned over to a carer role.

“I’ll be honest, the hospice was confronting at the beginning, and I was so nervous. Although, with the love and guidance of the Very Special Kids team I was able to relax and learn the language that our children speak. Many of them are non-verbal but have their own beautiful language that if you take the time to learn is so enriching. I feel so lucky that I am to be able to care for these kids, they have taught me so much.”

The role of a carer in the hospice, Mandy says, is to assist the nurses and therapists from a non-medical perspective.

“I think what makes a good carer is compassion and patience, its essential. It is important when working with our children to slow down, build a relationship with each child rooted in trust. It’s amazing how much more engaged a child can be when you both trust each other. It is a hard thing to learn and everyone in the Very Special Kids hospice has these traits,” she said.