For Katie, having NF is just something else that makes her unique. When asked what she thought about a new spot that her mum, Alison, noticed on her skin, Katie’s response was simple.

“Yep, I’m fine. I like my spots. They make me special. They make me, me!”

But it wasn’t long ago that Katie and her parents, Chris and Alison, were complete strangers to the world of NF.

Katie was barely three years old when she was diagnosed with NF1. The news left her parents numb.

“Imagine how hard it is to sit in a doctor’s chair with your just turned three year old by your side and being told that your child has a genetic disorder that you’ve never heard of, that there is nothing you can do about it, and there is little, if any, suitable treatment for its endless list of symptoms,” says Alison.

As a family they decided to confront the condition head-on and raise funds and awareness for NF and others like Katie who had the condition.

“The first six months were a real grieving process of trying to come to terms with it. I remember sitting in the kitchen one day and thinking I can’t feel like this anymore. I have to do something.”

And the Alfords did just that.

Katie’s dad, Chris, is a leading harness racing driver in Victoria and, using his involvement, decided to raise funds and awareness for NF by racing in CTF colours during NF Awareness Month in 2011. The Alfords received an overwhelming amount of support from the harness racing community, with race callers talking about NF during Chris’ races, and the Board of Harness Racing Victoria sending out flyers about NF and the Alford’s fundraising campaign.

Setting out with a goal of $10,000, the Alfords had raised over $60,000 by the end of the month, which was used to purchase a Mobile Spectral Domain Ocular Coherence Tomography System, or in layman’s terms a machine that can diagnose optic gliomas in children. While Katie doesn’t currently suffer from optic tumours, it will provide a big help to other children who do.

Katie and her parents continue to be big supporters of CTF and NF. Katie is such a fan of the Foundation that she spent her sixth birthday at the 2013 Gala Dinner in Sydney!

While Chris never expects to match the huge amount he raised in 2011, he is hoping that he and his family can continue to raise funds and awareness for the genetic condition that he holds close to his heart.

“I know that it’s tough times out there for a lot of people, so even if I can just continue to raise awareness, then I’ll be happy. If nothing else, it gives the families dealing with NF hope that one day a cure may be found. And we could all do with a little bit of hope.”