It is hard to think of a fundraiser who has more history with Jeans for Genes than Nikki Kegg. She started out collecting gold coins at her school as a young girl with cystic fibrosis and is now a mum of four running a marathon for Children’s Medical Research Institute.
“I’m turning 42 this year, a few days before the Sydney Marathon when I’ll do my first 42km,’’ Nikki said. “It really is about training your mind, as much as your body. I’ve never been happier, all the running is making me optimistic about the future for the first time, especially now I’m past the average CF life expectancy and that tell me I’ll likely die of old age.’’
When Nikki was diagnosed with cystic fibrosis, like so many others, she was told her life expectancy could be around her mid to late 30s. She was in and out of hospital as a child, always taking medication and doing physiotherapy.
When Jeans for Genes Day started in 1994, she knew exactly who Children’s Medical Research Institute was because she had walked the labs so often on her way to hospital.
“At the time that Jeans for Genes started I was in and out of hospital and really unwell,’’ Nikki said. “I was at school and I just decided I wanted to get involved. I knew that it helped kids with chronic conditions like CF and I wanted to fundraise and spread the word.’’
Nikki said she was embarrassed about CF, but it got to a point where she didn’t want to hide it anymore.
“It was inevitable that they find out when you’re doing physio and taking medications. I was a very physical kid and when I played sport I always had to stop and eat a Mars Bar or do something to replace my calories.’’
Nikki knew that becoming a Jeans for Genes fundraiser would give her a chance to talk to her peers about her primary school her condition.
“At my primary school Our Lady Queen of Peace in Greystanes, we had around 1000 kids and I got everyone to buy a badge and I did a speech. The school really got behind me. I went to every classroom to sell badges. I got a certificate for being one of the highest fundraisers and I won a computer. I went in the CMRI offices to collect it. It was our family’s first computer.’’
As she got older she appreciated her health and started to focus more on sport.
“I hadn’t done any fundraising for CMRI in so long and I started to think that I was taking my health for granted so I decided it was time I gave back,’’ Nikki said.
“The situation for people with CF has changed a lot. People were always talking about how your health would deteriorate and life expectancy was 38. Things have come a long way.
“Because I was told I was going to die very young, when I was around 14 I wrote a bucket list. In I said I wanted to run a marathon.’’
Since she started training for the marathon Nikki has been told she has the best lung function she’s ever had which is why she wants to use the Sydney Marathon as a fundraiser for CMRI.
If you’d like to donate to her fundraising page visit: