26 Oct 2023As parents, we've been on a unique journey since our son Keaton was diagnosed with cystic fibrosis through the heel prick test when he was just four weeks old. It was a moment that shook us to our core and led us through a grieving process we never expected.
Keaton, now a brave six-year-old, has shown us the true meaning of resilience. Each day, our lives revolve around a complex routine of treatments and therapies. Keaton faces multiple nebulisers, helping him inhale medications that clear his airways and improve his lung function. The "Percussive Positive Expiratory Pressure" or PEP therapy is another essential part of his day, assisting in loosening mucus and promoting better breathing.
However, our journey hasn't been without its unique challenges. Keaton is also a fussy eater, which adds another layer of complexity to his care. Many children with cystic fibrosis struggle with nutrition, and Keaton's selective eating made it even more challenging. This meant that he often didn't receive the necessary nutrients through a regular diet, and as a result, he faced difficulties in gaining and maintaining weight.
To address this, Keaton ultimately had to undergo a gastrostomy procedure, which allows him to receive the adequate nutrition he requires directly into his stomach. This decision wasn't made lightly and represented a significant milestone in our journey. It's an example of the lengths we've gone to ensure Keaton's health and well-being.
In addition to these challenges, our family has to grapple with the difficulties Keaton faces in school. Frequent sicknesses and hospital admissions often require him to take extended periods of time off from school, which is a strain on his education and our family's routine.
Then there are the medications, a daily regimen that Keaton dutifully follows to keep his condition under control. Enzymes with every meal help his body digest food and absorb essential nutrients that can be challenging for children with cystic fibrosis. It's a routine that requires precision and dedication.
But we're not in this alone.
The hospital team has been there for Keaton, guiding us through these treatments and therapies. And Cystic Fibrosis New Zealand has been a lifeline for our family and countless others. They provide a wide range of support, from connecting families facing similar challenges to offering vital resources and information. Their tireless advocacy and fundraising efforts have contributed to breakthroughs in cystic fibrosis research, offering hope for a brighter future for all affected by this condition.
Together, we've found strength in the face of adversity, showcasing the incredible power of determination and resilience. Keaton's journey has been our journey, and we continue to learn, adapt, and grow. We're also proud to share that our company is actively participating in an event called 'Round the Bridges’ to fundraise for CFNZ.
We truly appreciate the support of everyone in our journey towards a brighter future for individuals like Keaton.
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