A family’s journey with cystic fibrosis - CF Buzz

For six long years Caron and Matt desperately wanted to have a baby, but after 11 unsuccessful IVF attempts – their dream was slowly fading. They finally were able to conceive via a donated egg from Caron’s friend. They were full of joy and excitement that their dream was going to come true, unfortunately this was short lived. After years and years of waiting to become parents, finding out your newborn son has a life-limiting condition hits very hard.

Caron and Matt are the proud parents of Jude whose adorable, happy little nature draws everybody in. Rewind 17 months and what should have been the happiest time of their lives with the arrival of their beautiful baby boy, turned into a nightmare. At five weeks old they received a call with devastating news stating that Jude’s newborn screening test indicated he had cystic fibrosis and they needed to go for a sweat test. The sweat test confirmed he had CF. Jude was admitted to John Hunter hospital for three days, while Caron and Matt were educated about CF and how to care for Jude needs

Caron and Matt emotions were on overdrive.

“We were devastated to learn of the diagnosis and it’s absolutely heartbreaking to think of an uncertain future for our son.”

Suddenly they had entered an unknown world full of anxiety.

“That blissful new parent feeling left that day and was replaced by a constant fear and worry. We were thrusted into the role of learning to care for Jude’s condition with things like physio and salt intake.”

In Jude’s first year of life he was constantly on antibiotics due to the high risk of infection. People with CF must avoid people who are unwell, a simple cold or throat infection could lead to serious illness for Jude. So play dates, mother’s groups, birthday parties are difficult, if not impossible. This can be very isolating especially for new parents.

Caron says “Simple things like going to the beach need to be timed around routine care.”

Financially CF has a huge impact upon Caron and Matt, not only the expense of all the medication but the time needed to care for Jude. Caron is on leave without pay so she can look after him. This additional pressure has taken a toll on them emotionally as individuals and a couple.

At CFNSW we aim to help families like Jude’s and ease the emotional and financial burden caused by CF. Our social worker Kirsty works very closely with Jude’s family offering assistance to Caron and Matt.

Caron says “We see Kirsty at every clinic visit with Jude and she has been a tremendous support. Not only providing emotional support, but guidance with filling out various complex forms’.”

Caron and Matt just want the best life they can give Jude, “We hope that our son can live a long and healthy life filled with lots of love and happiness. We also hope for authentic recognition of the impact that CF has on families, including a genuine investment in positive future outcomes for families battling CF by all levels of decision makers in the wider community.

And of course we hope for a CURE for cystic fibrosis.”

Raising awareness is critical in helping to find a cure. CF impacts families on so many levels.

Thank you to Caron, Matt and Jude for sharing their story with us.

There are so many heartbreaking and inspiring stories from families and individuals living with cystic fibrosis. If you would like to share your story and help raise awareness please contact us on admin@cfnsw.org.au

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