Heamoor parents of cystic fibrosis toddler pledge to fight disease
THE parents of a happy 15-month-old toddler who has cystic fibrosis (CF) are determined to do their bit to create greater awareness about the condition and raise funds for future research.
Daughter Kacey was only two weeks old when Heamoor couple Danielle Willey and Jordan Taylor discovered that their daughter had the life-shortening inherited disease after a mandatory newborn screening.
“It was quite a shock when you are told the news – in our case it just happened to be on Friday the 13th,” said Danielle.
“However we have had great support from the hospital – our paediatrician has been brilliant and the rest of the staff as well – and everyone at Marazion Surgery has been amazing as well.
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“We are also very lucky in that both my parents and Jordan’s live locally and are very supportive.
“But like so many people, we knew absolutely nothing about the disease before we found out about Kacey.”
There have been health scares for Kacey – on her first new year’s day, she was rushed to hospital for five days.
“We thought it was just a common cough but Kacey ended up being on nebulisers and on oxygen; we also dash her off to the surgery at the first sight of a sniffle to check that she is OK.”
The prognosis for those with CF has improved dramatically over the past few decades – in the USA in 1959, someone with CF had a life expectancy of just six months; in the UK in 2013, it is 41 years.
But the constant research to improve that figure still further is ongoing – Kacey herself is currently trialling a new drug – and the need to raise funds to fund the research has prompted Danielle and Jordan to start fundraising.
“The Cystic Fibrosis Trust don’t get any NHS funding and we think it is so important to fund that research and help make more people aware of what CF is all about.”
Earlier this week the couple held a quiz night and a raffle at the Longboat pub and they hope to hold more events in the future.
Meanwhile Kacey is a “very happy – walking around and having the odd tantrum”.
“She’s a gorgeous little girl and has the most support and love from both the hospital and her family.”
If you would like to find out more about CF and the Cystic Fibrosis Trust, log on to www.cysticfibrosis.org.uk