Mrs Lilley said he was such a brave little man and due to his tremendous innate strength and determination he fought for his life and made it through to the other side.
He had surgery at two hours old that corrected most of his birth defects but just five days later he was discovered to have Arterial Septal Defect (ASD), a hole in his heart.
"We were told to wait and see as the hole may not have caused any problems or it may have closed on its own.
"Unfortunately Taylor failed to thrive when he was 12 months, weighing only 6.4kg and his gross motor development was lagging."
The family took a trip to Starship and spent 10 days in Ward 23B surrounded by Heart Kids volunteers and staff.
Mrs Lilley said the stress of it all was immediately reduced with staff constantly making sure they were okay and coping with the situation.
"There was an information hub, they showed us to our room at Ronald McDonald house, gave us breakfast and were just there for us."
Taylor now at Tamatea Intermediate is small for his age, being in the lowest percentile for height and weight, but has more energy than most.
Taylor said nothing holds him back and he loves cricket, cycling, scootering and playing with friends.
"I love cricket and through Heart Kids I got to meet the whole Black Caps team. My favourite players are Martin Guptill and Matt Henry and one time I got to play with them.
"I actually couldn't believe it, I thought I was dreaming but I wasn't as I was awake."
Taylor also goes on Heart Kids camps up in Auckland where he stays connected with fellow Heart Kids.
"We meet lots of different people and go rafting or play cricket and do lots of really fun and cool stuff."
In 2015 Taylor participated in the 5km Kids Heart Ride at Cycle Challenge and helped raise more than $850 for the foundation as a way of giving back.
This year he hopes to raise more money for the organisation so more Kiwis like him get the treatment and care they deserve, so he can make a difference.
"I just want to help little Kiwis like me and your big heart can help these little hearts face what no child should ever have to go through."
To donate and help children like Taylor visit: https://shakeabucket2017.everydayhero.com/nz/heart-kid-taylor.