Running for Roman
Fundraising for Cystic Fibrosis NZ
Wellington
One of my goals this year was to run a half marathon and I thought it would be a good opportunity to raise funds and awareness for CFNZ. I have registered to run the Taupō half in August 2024 & I have begun training!
Most of you won't know that my son Roman has Cystic Fibrosis (CF) it is by far one of the hardest things as a parent to process and navigate. I still remember to this day sitting in my lounge being told my baby has a incurable illness.
Cystic Fibrosis is an invisible condition. The physical impacts are not always obvious which can make it difficult for others to fully understand the daily struggles and limitations that individuals with CF experience.
Cystic Fibrosis is a progressive, lifelong and life shortening genetic condition that has no cure. It causes the body to produce a thick, sticky mucus that builds up and damages the lungs, digestive system, liver, and other parts of the body.
I'm raising donations for CFNZ, a registered charity, that has already supported Roman and will continue to do so in his journey throughout life.
Latest update
6 days to go! 28 July 2024
While I’ve chosen to mostly kept Roman’s health journey private I wanted to share more about Cystic Fibrosis.
Currently trikafta is funded in NZ for those over the age of 6 (who meet the eligibility criteria). It is the first medicine that can treat the cause of CF but it does not cure CF. The full cost of ONE year on this drug is approximately $330,000 NZD.
While this medication is funded as of April 2023, there is a lot more additional costs for patients and families that cystic fibrosis imposes. For example: lost wages for those with Cystic Fibrosis and their care givers and lost opportunities to work. Costs such as the hours spent doing daily treatments, going to and from hospital appointments, frequent hospitalisations, and a parent or caregiver having to give up work to care for a sick family member. Extra cost to grocery bills for a higher fat diet and additional nappies/wipes due to pancreatic insufficiency.
If you can! Spare your next morning coffee and donate those few bucks. Appreciate all the support so far can’t wait to cross the finish line for Ro 💗
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