Pocket rocket to raise funds for lifesavers

Taylor Lilley will be cycling 5km in the Lake Taupo Cycle Challenge. Photo / Duncan Brown

Taylor Campbell Lilley has a zipper on his chest and is missing a belly button, but he takes it all in his stride.

These physical markers reveal the tough start he had to life.

Fortunately, the nine-year-old is a happy active child - although a little smaller in stature than his classmates.

Taylor is now helping to raise money for other zipper kids - kids born with congenital heart defect - by cycling 5km at the Lake Taupo Cycle Challenge this weekend.

He will take part in the Heart Kids ride, with all sponsorship money going to the charity.

While it won't be a physical challenge for him, unlike some of the other children participating, it will be his way of giving back to the charity that helped his family so much when he was young, his mother Chris Lilley said.

"We are very blessed it could have been very different."

Taylor's journey started well before he was born.

He was an IVF baby after seven years of fertility treatment.

At the 12-week scan, the Lilleys were told that Taylor's major organs including his heart were outside his body.

"As you can imagine Trevor and I were extremely distraught."

Following his 20-week scan it was confirmed that Taylor had an Omphalocele (sack outside his body) that contained his liver and gut.

Tyler was born on January 17, 2006. Two hours later he was off to surgery.

"Unbeknown to us Taylor also had a diaphragmatic hernia, pericardial defect and hypoplastic left lung. Apart from the lung all was repaired during his surgery."

At 5 days old, he was diagnosed with a hole in heart. The Lilleys were told to "wait and see" how their son developed.

Aged one, Taylor weighed just 6.4kg and his gross motor development was lagging. Four months later he was in Starship having his heart fixed.

Fortunately, he recovered well and at 2-and-half-years old Taylor was being discharged from his specialists.

"Taylor has a zipper on his chest and no belly button to show for the start he had but takes this all in his stride."

He is now a very healthy boy, Mrs Lilley said.

"He is small for his age but has more energy than most kids and does not let anything hold him back."

Mrs Lilley calls him her "pocket rocket." He's the sort of child that comes home from school signed up to "everything". He's busy taking swimming lessons, softball and cricket this term.

"He's done very well."

Key heart disease facts

* Congenital heart defects (CHD) are the most common type of birth defect.
* Every week in New Zealand 12 babies are born with a CHD.
* A disproportionate number of Maori and Pacific Island children have acquired heart disease.
* Congenital heart defects are the leading cause of all infant deaths in New Zealand.
* About 450 open heart surgeries are performed on children nationwide.
* Heart Kids NZ relies on voluntary donations.