By Matt Male
CAPE Paterson’s Emma and Nathan Jones are supporting a charity dedicated to helping those born with congenital heart disease – following the passing of their baby Noah last year.
The couple hadn’t heard of the charity HeartKids until Noah, at their 22 week scan, was diagnosed with Heterotaxy Syndrome (Right Atrial Isomerism) – a congenital heart disease.
Baby Noah was born full-term at the Monash Children’s Hospital, but the right side of his heart hadn’t fully developed and he was born without a spleen.
At two weeks of age, Noah was transferred to the Royal Children’s Hospital for a shunt operation and an open heart surgery. He remained on life support for five days and passed away three days later.
Congenital heart disease is the biggest killer of children under the age of one in Australia.
In honour of their son, Emma and Nathan are making it their mission to raise funds for HeartKids, a not-for-profit charity dedicated to research into congenital heart disease.
The charity supported the couple through their journey, including assisting with the costs of Noah’s funeral.
“When Noah was first diagnosed with congenital heart disease, it was the medical staff who referred us to HeartKids,” Emma said.
“The charity always strives to help out families so they can enjoy time with their kids, without the financial burden.”
HeartKids also holds a free morning tea, twice a week, at several hospitals to reach out and offer their support to struggling families.
“Sometimes, they’ll organise tickets to sporting games or concerts.
“I recently read of them organising for one girl to go to the Melbourne Cup, with her dad, and pat the winning horse.
“It’s similar to the Make-A-Wish Foundation however the majority of the funds go towards vital research into congenital heart disease.
“We have read up on some of the studies and it has definitely made a difference over time.”
The couple didn’t realise how common congenital heart disease was until Noah’s diagnosis.
It affects between 2400 and 3000 babies each year, according to HeartKids.
Noah’s particular abnormality occurs in one in every 250,000 babies.
“The main focus is with children, as the death rates are highest among them, but they also help out teenagers and adults tackling congenital heart disease.”
Emma has also set up a blog, sharing Noah’s personal journey, to help raise awareness for congenital heart disease at www.lionheartnoah.wordpress.com
“Noah quite quickly became our life and I couldn’t imagine any other parent going through the same heartache,” she said.
On Wednesday, February 14, HeartKids is holding its annual Sweetheart Day to help raise funds.
You can get involved by hosting an event with friends, family or colleagues, purchasing merchandise or door knocking to raise awareness.
“If you miss this one, they continue to host events and fundraisers year round so there are always ways to be involved,” Emma said.
To donate, go to www.heartkids.org.au