Charlies quest for CF ( Cystic Fibrosis )
Help Charlie to continue his quest to help other Cystic Fibrosis Family's!Bay of Plenty
Charlie was diagnosed with Cystic Fibrosis ( CF ) at a few weeks old when he had his heel prick test.
For the first year it was scary, overwhelming, and a shock to hear that our new born child has been diagnosed with a life threatening disease. We had so many questions, and so much information to absorb along with endless trips to the hospital! But with the amazing support of the Medical Team at Tauranga Hospital, family and Cystic Fibrosis New Zealand we got through. All donation through this page will go directly to Bay Of Plenty Cystic Fibrosis Association.
Cystic Fibrosis is the most common inherited genetic condition in NZ. One in 25 of us carry the gene. CF affects many organs in the body, primarily the lungs and the digestive system. Thick mucus in the lungs means most people with CF do breathing exercises, combined with liquid medications taken via nebuliser treatment daily. Therefore physiotherapy, exercise/sports, keeping healthy (away from bugs) and eating the CF way (high energy, high fat and lots of salt are key ingredients) are virtually important and require more effort and costs than for people without CF. One of the most striking features of CF is cross infection. Two people with the condition should never be in close contact as their lungs harbour specific bacteria that are a risk to someone else with the condition. This means no group support and the added stress of having to physically avoid others with CF.
Over the past ten years, Charlie and our family have been learning to live with this disease along with his day to day physio, medication, weekly/monthly/ 3 monthly hospital visits/clinic's and yearly starship check up's, and never to be forgotten hospital admissions and pick line's! Amazingly right from a small age Charlie has an unspoken understanding of what he needs to do to keep himself well from simple things such as avoiding places/thing's or circumstances that are considered high risk, and daily routines/medications, of course there are day's when it's a struggle, but he always seems to endure most situations.
Now this amazing young man has come so far from rarely talking about his CF, to wanting to help fundraise selling chocolate fish and raise awareness of CF! He is still quite shy but we are so so proud of him as he has got up in front of his classes at school to tell them about our chocolate fish stall at lunch times as well as doing a small presentation in his class about what CF is (see pic's in gallery if you'd like to read it) to having a stand outside Mitre 10 Mega (see picture in gallery).
We have many people to thank for their help and generosity selling the chocolate fish, from family and friends taking boxes of fish to sell at work, to pounding the pavement! The biggest thank you is to 414 Café in Pyes Pa Tauranga as from Charlies fundraising there (and The Weekend Sun's article, link bellow) things have just gone from selling a few chocolate fish to a cool, heart warming fundraiser and awareness adventure.
Charlie is a massive speedway fan, his wish is to go to all speedway track's in New Zealand and become a driver himself when he's older. He is the biggest Team's racing fanatic (super stock team's racing in Palmy), so when Kerry Remnant (super stock driver, see pic in gallery of him with Charlie) seen Charlies article in the paper and contacted us for Charlie to meet him, Charlie was elated to say the least! From this meeting and thanks to Kerry's Facebook posts his kindness and caring, messages of wanting to help have ,been endless. Hence the creating of this page.
We are also getting some CF NZ sign written stickers made to go on race cars to help raise awareness, a big thank you to Paige Cook for getting us some stickers (Paige's husband and brother in law have them on their race cars already). See pic in gallery.
Also a big shout out and thanks to Annan Racing, Scorpion Racewear NZ, Goat, Donna and Karena for there generosity and chocolate fish purchase, they handed out $300.00 worth of chocolate fish to race fans😁🏁👊🏻😍 (see pic's in gallery).
For further information please visit: www.cfnz.org.nz
The Ford Family's involvement (page creator)
To raise awareness of Cystic Fibrosis, help fundraise for individuals/family's intern helping to ease there day to day lives of living with a life threating disease.
Other page links
Thanks again 🙂 16 February 2021
Hay all if you haven't already please sign this petition below for getting life changing Trikafta for New Zealanders with Cystic Fibrosis 💙
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This page was created on 26 Jan 2021 and closed on 26 Jul 2021.