For Casey and Riley, the family fun days that Heart Kids holds locally are a favourite as they can meet with other brave hearts and realise that there are so many others going through similar experiences as them.
“Heart Kids has been amazing throughout our journey, they really go out of their way to make your child and your family feel special,” says Alison.
As it is for most brave hearts, Casey and Riley’s future is uncertain. Casey’s third open-heart surgery was a repeat of her second open-heart surgery, and the family is currently taking a wait and watch approach with Riley. Throughout all the surgeries and the fear they invoke, having their family support worker Marlene by their side has no doubt been the most valuable support throughout it all. “The family support coordinators were a constant friendly face in the hospital ward who would visit us daily to see how they could help. And that made a real difference compared to the busy doctors’ and nurses’ fleeting visits”.
Alison’s best advice for other parents going through something similar is to reach out to Heart Kids and meet your local family support worker. “Discussing your worries, fears and hopes with a friendly face who understands what you are going through will help you in more ways than you might think”.
Heart Kids provides lifelong support to all affected by a childhood heart condition or heart disease acquired through childhood. At every step of the heart journey – from when a heart condition is diagnosed, through childhood, the teenage years and into adulthood, it provides vital practical and emotional support, helping individuals and families cope with the day-to-day challenges of living with a childhood heart condition.
June 7-13 is Heart Kids Awareness Week. You can find out more at heartkids.org.nz.