NF FAMILIES - Julias NF Family Story

NF News / 20 Aug 2018

Here is what Julia has taught me
Mona Saleh (CTF Support Manager) 

Since I started working at CTF, I have had the joy of meeting many NF community members and learnt about how they manage their health, both emotionally and physically. Many of these people have done more than teach me about their resilience, they have inspired me to reach out and make more connections. One person who stands out for me is Julia. Julia is an amazing lady (as you will see from her personal story below) but she has neglected to mention some of the reasons I feel she is inspiring.  

  1. Julia is one of CTF’s Peer Support Leaders. She initiated the NF Sippers in Wollongong almost 2 years ago and continues to meet monthly. This event provides ongoing support for locals and is for some the only contact they have with others in the NF community 

  1. She donates her time (and herself) to medical teams learning about NF. Despite living outside of Sydney (where most medical training occurs in NSW), Julia travels to clinics where specialists such as dermatologists are training. This is a huge advantage for those lucky trainees and means that NF will become more widely understood in the medical community.  

  1. She is training for an epic walk! Later in the year, Julia is travelling to Europe to embark on the physically and personally challenging Camino de Santiago pilgrimage walk.  

I’m exhausted just listing these things!  

Thank you, Julia, for being an NF Hero, your generosity and resilience is something I hope you will always feel proud of.  

Jessica, Ralph and Julia at Cupids Undie Run 2018 

Julia’s NF Family Story 

I was diagnosed with NF when I was 20, but doctors had their suspicions since I was about 6 or 7.  

Jessica showed her first cafe au lait when she was 6 weeks old.  I was devastated.  

NF is a nasty beast to live with, it's the unknown, the progressiveness, the disfigurement.  The ticking time bomb waiting to go off. It wasn't until the internet came of age that I slowly began to heal, I came across others just like me. 

In 1999 I became involved with the NNFA, which later became The Children's Tumor Foundation. (I am living in the USA at this point). I ran my first marathon for NNFA in San Diego in 2001, raised $$ and awareness.  At last I was doing something. I spent the next 7 years running marathons, raising $$ and awareness.   

Back home in Australia I wanted to be able to do the same, but it was hard.  In 2008 I created *Run the coast for NF* and raised a few thousand dollars, we then tried another event the following year but it was hard, still raised some $$ but without the full backing of CTF here (they tried) and with Kiama council giving us some road blocks I gave it up.  So I was excited when Cupids came to Sydney in 2013(?) And then it came my way!  

Living with NF is hard, especially when you're an adult, so much more out there for children under the age of 18. BUT! Doing something to help is healing. 

We've had our health issues, our surgeries, right now we are both healthy.  

As Ralph says...   

Yesterday is history - tomorrow is a mystery. Another day in the life of a family living with NF. Let's go girls! 
Ciao, 
Julia 

 

Have a wonderful adventure on the Camino de Santiago Julia. Everyone at CTF looks forward to hearing all about it and wishes you a safe journey.  
Mona Saleh (CTF Support Services Manager) 
Mona.saleh@ctf.org.au 
02 9713 6111