Halor's story

13 Jul 2017

It started out as one of the most exciting times of their lives but when Shoresh and Alicia found out their baby boy had a heart condition just days after he was born, their world turned upside down.

Halor was born weighing only 1.8kg, just less than the average bag of flour. At the time, his parents had no idea how sick he was but the series of tests that followed revealed that Halor not only had a heart murmur, but also a condition called aortic stenosis.

“We didn’t even know he was sick. When he was born and he was so little, we went straight from the hospital to The Children’s Hospital at Westmead and that’s when we found out how unwell he was. It was terrifying,” Alicia said.

The condition meant that Halor’s aortic heart valve was significantly restricted, making his heart work overtime to pump blood to the rest of his body. For some children, the effects on the heart are only mild and require little or no intervention but Halor’s condition was so severe that he required surgery immediately.

Doctors initially tried to insert a stent to help widen Halor’s valve and allow more blood to flow from his heart, but unfortunately Halor was too small for the procedure to be successful. This meant open heart surgery was the only option.

“Finding out Halor would need open heart surgery was so overwhelming. We were all so scared and worried but we knew it was the best option to get him better,” Alicia said.

Following the operation, Halor grew in leaps and bounds, regaining the energy and strength that had been missing for most of his short life.

“Before his operation, even as a little baby, he was so quiet and was always tired and crying but after his surgery, he was like a changed baby. He had so much energy and was so active, he just wanted to go and go and go.”

Eleven years have now passed since Halor’s big operation and while he still wears the scar on his chest, nothing is holding him back.

“The Hospital has helped Halor and our whole family so much. They have given us a happy, healthy boy who can really enjoy life!” Alicia said.

“He still needs to come to hospital once a year for his annual check-up but other than that, he is just like any other 11-year-old. He loves his sport like Muay Thai boxing, trampolining and swimming and is always up for a challenge.”

This year, Halor is running as part of Team Bandaged Bear in the City2Surf with his family, not only to give back to the doctors and nurses who helped him, but also in support of other children with heart conditions similar to his.

You can go the distance #forsickkids too by registering as part of Team Bandaged Bear or by making a donation.