Parents Rohini Dobell and Alan Smith’s parenthood experience has been vastly different to most first time mums and dads. 

Instead of breast feeding and nappies, the couple dealt with tubes, four operations within one year and countless tests for little Alira.  

Both said support from not-for-profit organisation HeartKids and other ‘heart kid’ parents is what has helped them through their toughest times. 

“They supported us, whether it be financially with gift packs like a haircut for Rohini if she was staying at the hospital in Melbourne or a fuel voucher for me for driving back and forth from Ballarat,” Mr Smith said. 

“They had morning teas twice a week at the hospital. It gave parents a chance to interact with parents who were going through the same thing.”

Mr Smith and Mrs Dobell have been ambassadors for HeartKids for more than five years. They were the first ambassadors to create a HeartKids community in Ballarat. 

The couple helped organise Two Feet and a Heartbeat, the first walk for congenital heart disease to be held in Ballarat.

More than 80 families participated in the walk at Victoria Park on Sunday, with the option of a four kilometre and eight kilometre route.

The walk honoured the four lives lost and the eight babies born with congenital heart disease each week.

“To have something like today (Sunday) is huge, especially for Ballarat,” Mrs Dobell said. 

“Congenital heart disease is common. It is about getting the word out there and letting people know we are there for support. Let’s raise money, get together and talk about it.” 

Congenital heart disease is one of the leading causes of death of Australian babies under one and the most common birth abnormality affecting one in every 100 births. 

There is no known cure. It is a complex chronic disease requiring lifelong treatment.

Alira Dobell spent the first year of her life in hospital in and out of the intensive care unit, at one stage under the care of 11 specialists. Now she is a happy six-year-old who loves school, but the family continue to experience health scares. 

Mr Smith and Mrs Dobell said it was a great emotional support to connect with other Ballarat families in similar situations. 

“Talking to someone who understands what it is like to be stuck in hospital, understanding having all these specialists you have to go to and what the specialists do is huge,” Mrs Dobell said. 

“The kids get to meet up with other kids who are in the same position and the siblings can talk about what it is like to be a sibling of a child with a heart condition and miss school because their sister or brother is in hospital.”

“On the severe end of it it is to be a support to families who have lost children as well,” Mr Smith said.

“We have been there and lost two children ourselves. To be able to offer support for those who may have lost heart children and receive support back to is so important.”

Two Feet and a Heartbeat charity walks were held in 20 locations across Australia.