Families across the Northern Beaches are being encouraged to register for the annual HeartKids Two Feet & A Heartbeat charity walk on Sunday, 17 October to help raise funds for kids living with congenital heart disease (CHD).
Congenital heart disease is one of the leading causes of death of Australian babies under one, and one of the most common birth abnormalities affecting one in every 100 births.
For local five-year-old Amelie Hope York from Dee Why, the day will have extra significance marking five years since her first open heart surgery at just three days old and recently appointed as HeartKids ambassador for NSW.
Amelie was only 24 hours old when doctors came around to complete the routine newborn check. After some tests, doctors noticed she had a high heart rate and low oxygen levels.A decision was made to transfer her to a neonatal intensive care unit (NICU) for monitoring.
Hours later, a cardiologist conducted an ultrasound of the heart, which detected Amelie was born with a type of congenital heart disease, known as Total Anomalous Pulmonary Venous Return (TAPVR).
Amelie was transferred to the Children’s Healthcare Hospital of Atlanta, in Georgia USA, and admitted to the cardiac intensive care unit where she had open-heart surgery at three days old.
Amelie’s mother, Sharon said the ordeal impacted the whole family, including older sister Charlotte.
“Amelie’s diagnosis opened a whole new world that we never knew existed,” Sharon said.
When the York family moved to Australia in 2019, they wanted to continue the support they received overseas from an American support group for families going through children with congenital heart disease.
“When we arrived in Australia, we wanted to get in touch with similar families who share our worries and concerns. These groups provide as an opportunity to connect and help raise awareness to advocate for more funding into research,” Sharon said.
For many kids with congenital heart disease (CHD), surgery is not a cure and I know firsthand that the worry and concern for our kids does not go away.
“We are so grateful to have found and include HeartKids in our lives. They unite us at events so we can connect with other families like ours, where we can cry and laugh together. For many kids with congenital heart disease (CHD), surgery is not a cure and I know firsthand that the worry and concern for our kids does not go away. It is so comforting to know that HeartKids provides ongoing support for CHD children throughout their lives including their families,” Sharon said.
The York family are encouraging local families from the Beaches and across NSW to register for the virtual event which involves a ceremony to pay tribute to Heart Angels, followed by a walk in the local neighbourhood. It will conclude with a variety of online activities.
“If you see other families walking around with Two Feet and A Heartbeat memorabilia in the Northern Beaches, in particular Dee Why or Manly Esplanade, be sure to give each other a wave with your flags,” Sharon said.
Families have the choice of a 4km or 8km walk across the Northern Beaches to support the eight Australian babies who are born with congenital heart disease each day, and reflect on the four Heart Angels who sadly pass away each week.
Full event details including purchasing tickets can be found here: www.twofeetheartbeat.org.au/