Congenital heart disease is one of the leading causes of death in Australian babies and HeartKids is calling on people in the Hastings to show their support to find a cure on September 9.
The annual Two Feet and A Heartbeat walk will take place at Town Green from 9am and will raise much-needed funds to find a cure for the disease.
Port Macquarie mum Caitlin Walter said her connection to congenital heart disease started when she was 18 weeks pregnant with her daughter Kylah.
“When I was 18 weeks pregnant I was told my unborn baby had a hole in her heart during a ultrasound,” Ms Walter said.
“Further investigation from the cardiologist showed that she had Atrioventricular Septal Defect (AVSD) which meant there was a large piece of her heart missing, which also meant she would need open heart surgery at around five months old.
“Kylah went into heart failure at two months old and had heart surgery at three months old and went on to have six other surgeries during the first year and spent months in hospital.
“She ended up have lots of complications during heart surgery which lead to her needing a mechanical mitral valve and a pacemaker.”
Ms Walters said her daughter will continue to need heart surgeries as she grows.
“Kylah, who is soon to turn six, will need many more heart surgeries in the future; she has s complete heart block and her heart doesn’t work without the pacemaker,” she said.
“Her heart will get weaker as she gets older and we don’t know what the future will hold.
“Kylah was also diagnosed with Down Syndrome at 18 weeks gestation and while it was a big shock to find out she had heart disease was even more scary.”
She said that while heart disease does run in her family, Kylah’s was not related.
“Heart disease does run in my family with my older sister having it, which involved her having heart surgery at eight years old.
“But Kylah’s is due to her having Down Syndrome. Fifty per cent of babies born with Down Syndrome have heart disease.”
Mr Walters said dealing with all of the issues surrounding Kylah’s condition is hard, but family and community support is a huge help.
“Heart disease has affected my family a lot; all of Kylah’s medical needs are around her heart,” she said.
“There were so many times we thought we would lose her in the hospital and we have to take regular trips to Sydney and Newcastle for check-ups and tests.
“Anytime she gets something as simple as a common cold it usually involves hospital visits, countless doctors, being poked and prodded and lots of stress on her and me.”
She said a normal day in the life of a family of a child with heart disease is hard.
“Medications are an everyday thing and will be for the rest of her life.
“Kylah is on blood thinners due to her heart disease and any tiny little fall can be fatal.
“She gets tired so quickly and is actually in the process of getting a wheelchair due to her heart condition. She can’t do things other kids can do which is hard as a parent to watch.”
Ms Walters also said that with no cure for the disease, it is important the community gets behind walks like the one on Sunday.
“I was first told about HeartKids when Kylah was born and they have been a great source of help.
“My mum does lots of fundraising for them and we always go to the walks every year.
“I think it is very important for people to get involved in the Two Feet and A Heartbeat charity walk this weekend.
“This is a very good cause as eight babies are born with a heart defect everyday in Australia.
“Heart disease is the biggest killer in kids under one and each week, four young lives are lost as a result of heart disease.”
Registrations on the day open at 9am with the walk starting at 10am at the Town Green. Before the 1.6km walk there will be a small ceremony to remember all of the children who have died from the disease and there will also be a BYO lunch after the walk.