Through her foundation, Stella Bella Little Stars Foundation, for the past three years this dedicated group led by Suzanne has been diligently and quietly rolling out The Little Stars Bead Program, which gives children decorative beads for each time they undergo a medical procedure or treatment, in recognition of their bravery.

Having lost her daughter, Stella, at nine months, Suzanne knows only too well what the families she is supporting are going through.

“We spent half of our daughter’s short life in hospital and half of it caring for her at home in palliative care,” says Suzanne.

When Suzanne and her partner, Matthew, found out in utero that their baby had Down syndrome, they made the decision to give her every possible opportunity in life, she says.

When Stella was born at Westmead Hospital, in Sydney, she was taken to the adjoining intensive care unit in the children’s hospital.

“Half of Stella’s heart was not fully formed. And we found out later that that the other half was not good at its job,” says Suzanne.

For the next month, Stella underwent heart surgery in Sydney.

At that time, Suzanne recalls being introduced to a beads program to support children with heart conditions and was touched by its simple but poignant meaning.

“After the first surgery, the strength that we had hoped Stella would have gained did not grow,” says Suzanne. “The doctors told us that they couldn’t offer her any more surgery.”

For the rest of Stella’s life, Suzanne’s home was turned into a mini ICU to care for Stella.

“We learnt a lot in the ICU and kept a diary of how she was progressing every day,” she says.

“Family and friends cooked for us every night and helped us keep everything going for the four and a half months that we cared for Stella at home.”

In early 2012, Suzanne decided to start her own foundation and offer a beads program to any child in Canberra with ongoing medical procedures for long-term illness. She sourced the beads online, carefully choosing the beads that had meaning.

“We were just four ladies to start with, now I have an amazing team of 20 people helping us,” she says.    

“We just started it and found that there were lots of families keen to be involved with the beads program. We worked with the staff at Canberra Hospital to create a list of 32 procedures that the children would undergo and the nurses promoted it to their patients.

“Some children have over eight metres of beads since we started.”

The foundation offers this to any Canberra region child with serious illnesses such as cancer, cystic fibrosis or genetic disorders.

The program has been such a success that Suzanne has secured a grant through St George Bank to help roll out the beads program in 22 hospitals across three states by the end of March.

Through their annual Stella Bella Little Stars Ball, the majority of their funds are raised to fund the beads program as well as an inaugural family camp planned for November. The foundation also provides financial grants, petrol and food vouchers and other essentials to help local families doing it tough with a sick child.

“Everything we do is for the kids and their families. If you are a sick child, you need your parents on board, together and coping – it is such an important part of healing,” Suzanne says.

More information, make a donation or register interest to volunteer, visit stellabellalittlestars.org.au