Alira is just 2 and a half years old, and has spent most of her short life in and out of hospital.
Today Alira is an energetic toddler, walking about with her feeding back pack. She has some minor developmental delays but the spark and glean in her eyes says she will be just fine. Her little face is filled with delight and her parents (Rohini and Alan) are just brimming with positivity and genuine desire to make a difference for other families who have it harder than them.
You wouldn’t think it could get much harder. Alira’s younger brother, Oskar, passed away when at just 21 weeks in the womb, also with a heart condition. Yet their little family keeps on smiling and counting their blessings, including a gorgeous new addition; a baby sister, Sadie.
Rohini and Alan are the Ballarat Heartkids co-ordinators, a foundation and support network around Australia, for families with children who have heart conditions. Some families will spend years in the Royal Children’s Hospital, others will grow up and live normal healthy lives, and some will sadly lose their battle and pass on.
Alan says “in the hospital you have the support around you all the time, there are twice weekly afternoon teas and the people are there to contact you and see if you need some support. But once you leave the hospital you lose that support base. So it’s important to reach out to as many Heartkids families as we can, to let them know we are here if they need us”.
“We have quarterly catch ups during the year, and a special one for end of year. We do picnics and barbecues, and sometimes we won’t even talk about the heart conditions. It’s just a great outlet for families to feel normal, without anyone looking or asking questions about some of the apparatus the kids have to wear.”
Part of their role as the local co-ordinators is also fundraising for the foundation, but Alan and Rohini are very conscious of constantly asking their friends and family for money. So they like to try and come up with other ideas of raising money or collecting donations of goods or services to help the foundation and the Royal Children’s Hospital.
Last year they organised a Bush Dance, raising over $1000 with donations from supportive local businesses. And they also collected toothbrushes and toothpaste products for heart kids at the hospital, because oral hygiene is very important for the children due to the risk of infections. They hope to continue the Bush Dance and other fundraising events into the future.
Rohini says “One of the big questions we get asked is about special needs classes for kids with heart conditions. Like all kids they want to be involved in activities like sports and dancing, but some of the classes too up paced for them to keep up physically. Facebook as a great tool for finding out information like this, but it would be great to have a good source somewhere”.
“1 in 5 children will have heart problems when they are born, but if the families don’t tick the box to go into our database at the hospital, we will never know about them. So we need to find other avenues to get out into the community and let parents of heartkids know that we are here, and that they can contact us any time. At the moment we only have about 13 families on our Ballarat register, but with statistics like that, we know there are more”.
To join or support Ballarat Heartkids call 0400 984 975
Like Heartkids Victoria on Facebook
Visit the Heartkids Australia website