65k for 65 Roses: Dubbo family tell of cystic fibrosis struggle

First-time parents who have endured months of separation and heartache as their baby’s life hung in the balance during a pandemic are showing their gratitude in a very inspiring way.

All Adam and Rachel Heather ever wanted was to have a child and when Aston was born 13 months ago they never foresaw the trauma that was about to hit their little family.

Now, despite a heartbreaking fight for survival, the Dubbo couple are sharing their story and showing their gratitude by walking great distances and raising money for services who helped them in their darkest days.

Rachel, Aston and Adam Heather. Picture: Supplied

“We knew something wasn’t quite right after he was born, he wasn’t gaining weight and we were struggling to find the reason why because we had no family history of cystic fibrosis (CF),” Mrs Heather said.

Tests revealed Aston had cystic fibrosis, a rare and incurable condition which affects about 3500 Australians and causes an abnormal build-up of mucus in the lungs, airways and digestive system.

“It was really a horrible experience, he was in the intensive care unit for about two months and we weren’t sure at some stages if he was going to make it,” Mrs Heather said.

“He was in hospital for about six months and in addition to him having CF he also has an airway issue which required him to get a tracheostomy

“He has also had liver disease caused by the CF which caused him to have quite significant, life-threatening liver bleeding. They cut his stomach open to try and stop the bleeding in his liver.”

Aston Heather has fought hard to survive.

While Aston’s life was being saved by the team at The Children’s Hospital at Westmead, COVID-19 was spreading through Sydney and restrictions on hospital visitors added to the Heather family’s pain.

“We couldn’t both be in the same room together when he was really, really sick because they had all these restrictions where only one parent could be there so we weren’t in the same room as a family for a couple of months,” Mrs Heather said.

“We couldn’t have any family there to support us.

“Adam didn’t get to actually hold Aston for about two or three months because he was so unwell.”

Financially, she said the family has also struggled with “all the expenses of going back and forward to Sydney so often”.

“I was working full time and the intention when you have a child is that you will go back to work in some capacity and for me not to be able to go back to work as I wanted to was very difficult and it meant Adam had to work more,” she said.

“We just love Aston and wanted nothing more to have a child and we’ve got a really good child, despite everything he really fought hard and it’s really hard not to fight when your child’s fighting that hard.

“We have really good friends and family who love us and all support us.”

Aston is a huge Panthers fan.

Mrs Heather said Aston and the family were relieved to be back in Dubbo after their horror 2020.

“He has medication pretty much every time he eats but he still struggles to put on weight so he as a permanent feeding tube in his stomach and he’s fed a lot of his nutrition through there.

“He got a little bit sick last week with an infection so we spent a couple of nights in Dubbo Hospital, but he’s home now he’s walking, he’s pretty happy, he doesn’t know otherwise.”

The family’s attention has turned to a new challenge, the 65K 4 65 Roses event which raises funds for The Children’s Hospital at Westmead and Cystic Fibrosis Community Care, an organisation which supports people living with the condition and funds medical research.

“The event this year is held over a week because of COVID, it can’t be a single event so it’s a virtual walk,” Rachel said.

“Aston and I are going to do 21 kilometres during the week of February 13 to 21, and then Adam and some of his friends from work are going to aim to walk 65km in one day on February 20.”

Aston is happy to be back home.

Aston and Rachel will walk daily around the Macquarie River, while Adam is planning on doing three laps around the whole of Dubbo to hit his target.

In exchange for their efforts, the couple want people to consider making a donation to their chosen causes.

Already more than $2400 has been raised, however the couple have set a fundraising goal of $5000.

Donate to Team Aston here.