“Ari was born a perfectly healthy little boy- but then his parents got the news nobody wants to hear

Like many newborns, Ari dropped around 10% of his birth weight in the first few days. Nothing to worry about initially, but when his weight continued to fall, his mum Jodie, became concerned.

 “The midwife noticed he was dribbling and on further investigation we discovered he was tongue-tied and wasn’t feeding properly,” explains Jodie. 

“I just thought, ‘we’ll get that fixed and he’ll be right’.”

When Ari’s heel prick test results were back, the hospital rang Jodie and asked her to come in. “As soon as the nurse said, ‘bring a support person with you,’ I knew something was terribly wrong with my baby!” she says tearfully

Jodie and her husband were devastated by the news that little Ari had cystic fibrosis (CF).

We desperately need your help to support children with this life-shortening genetic condition.

Jodie explains, “the diagnosis came as such a dreadful shock.  We’d never heard of CF before and have no history of it in our family.” It seems nobody knows about this silent illness until it happens to them. 

“This was not how our life with a new baby was supposed to be.  It was such a whirlwind. We spent three days at hospital.  The medical team worked out what medication Ari needed and taught us how to care for him. It was so intense.”

Giving a gift this Christmas will help support families like Ari’s through the tough times.

Cystic Fibrosis Community Care NSW (CFCC) provides specialist counselling, social work, financial and in-hospital support, specialised equipment and online educational resources. Our aim is to improve the quality of life for people living with CF. 

Life with CF is extremely difficult and currently there is no cure.
We need to provide families with all the support we can, especially at Christmas time. Anything you can give will help CF families like Ari’s struggling with this life-shortening condition.

‘CF has put a huge strain on us financially and emotionally. We also have a 12 year old son who still needs to be cared for. ‘

 ‘CF has changed our lives dramatically. I was unable to go back to my work in childcare. I now work at Woolworths at night, so we can still pay our bills.’ says Jodie

Ari is just over 18 months old now. His first 12 months were particularly tough with multiple hospital stays. He was in hospital because of viruses, there were procedures to clear the mucus in his lungs and IV antibiotic treatment for a very dangerous bacterial infection.

Right now, Jodie is celebrating the first two-month period since Ari was born where he has not been hospitalised. “I need to be so careful though, because if he gets sick, he’ll end up in hospital again.”

The future is daunting for little Ari. But with your support we can ease the financial and emotional burden of CF for families like Ari’s. I hope you will support us again in the fight against CF this Christmas.

Please support CF families and light up their Christmas this year.

From the CF team here, and from Ari's family - thank you.


Cystic Fibrosis NSW

Cystic Fibrosis Community Care (CFCC) NSW is committed to the provision of timely, effective, person-centred and evidenced based information and services. We work with people living with cystic fibrosis, their families and carers, and raise awareness about CF with the community. CFCC NSW provide a range of support services, education and research that will help people with CF now and into the future.

 

Every 4 days

A baby is born with CF every 4 days. Most won’t turn 40.

 

1 in 25

1 in 25 people carry the gene. most don't know it!

 

No Cure

Currently there is no cure for cystic fibrosis. 

 

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