Tag Archives: Epilepsy Foundation

Adventurer of the Month – Phu Le

Phu Le

Cause: Epilepsy Foundation
Adventure: Great Wall Trek for Epilepsy
Fundraising Page: everydayhero.epilepsyfoundation
Social: @le.phu

As our Adventurer of the Month, Phu has scored himself a $100 Paddy Pallin voucher! To be our next month’s winner, make sure you upload your journey to social and use the hashtag #IveBeenInspired.

What inspired you to take on your Inspired Adventure with the Epilepsy Foundation?

My highschool friend Carly introduced the idea to me in January. I discussed it with my wife, Lai-Wan, and when we read that it was aiming to raise awareness about epilepsy and to help raise funds so that the Epilepsy Foundation can continue to provide wonderful support services to people living with epilepsy and their families then we both knew that we wanted to be involved.

My 3.5yo son, Ethan, has been diagnosed with Dravet Syndrome which is a very rare and devastating form of epilepsy so it’s been a tough journey working through that news as a family. Fortunately, we have had access to world-class medical experts, excellent hospital care, helpful education and a wonderful support network of caring family and friends.

The sad reality is that there are many other epilepsy sufferers out there who may feel very alone and who might not have the luxury of those things due to various circumstances but the Epilepsy Foundation works with them to bridge that gap and they also work with organisations and communities to reduce the stigma and discrimination associated with epilepsy.

Although taking on this adventure will not fix Ethan’s condition nor will it miraculously find a cure for epilepsy, we are doing it with the hope that together with our supporters we can contribute towards making the lives of fellow epilepsy families better; and through talking about it more with local media, organisations, schools and various groups we can all help make them more aware about epilepsy and more accepting of the people who live with it.

How are you feeling about the challenge ahead? Have you ever been to China before?

I’m looking forward to the opportunity to bring more attention to the lack of awareness and funding around epilepsy. It’s such a common disorder yet it’s not commonly understood and it’s grossly underfunded in terms of research. The trek itself will be a physical challenge and I’m daunted by the thousands of stairs that we will need to climb each day but I’m also excited to visit China for the first time and step foot on such a world-famous landmark.

What have been some of the highlights of your fundraising experience so far?

We’ve been absolutely overwhelmed and humbled by the number of family, friends, colleagues and friends of friends who have jumped on board early to support this great cause with their generosity, encouragement and ideas. I’ve had people personally telling me that they didn’t know much about epilepsy beforehand which is great news as that means the awareness is slowly spreading. I’ve also had the opportunity to meet and work with some very interesting, talented and passionate strangers who have helped me through this adventure.

"Although taking on this adventure will not fix Ethan's condition nor will it miraculously find a cure for epilepsy, we are doing it with the hope that together with our supporters we can contribute towards making the lives of fellow epilepsy families better"

What have been your biggest challenges in taking on an Inspired Adventure? How did you overcome this?

To be honest I initially debated whether or not I should do this because it would be an expensive exercise for our family both financially and emotionally even though it wouldn’t bring any direct tangible benefits to help with Ethan’s condition. I felt guilty as a husband and as a father because doing this would mean spending our finances on things unrelated to helping Ethan’s condition and it would shift some of my focus away from my family.

I overcame this by thinking about all the times that we’ve felt excluded from various schools; the times when we felt judged by others due to the learning, development and behavioural side-effects of epilepsy and the medications needed to control it; and how lonely, lost, confused and broken we felt throughout our journey with epilepsy.

Thinking about the bigger picture, I wanted to make some form of difference in the way various groups and organisations treated people like Ethan and I wanted other people like Ethan and their families to get the help and support that they need and doing this adventure would give me that focus.

I also wanted to be a role model for Ethan – to show him that we can overcome big obstacles, that we can make a difference with something we believe in and that it’s humbling to do something good for someone else other than for our own benefit when we’re presented with that opportunity.

Have you noticed any changes or transformation in your life since taking on the adventure?

It’s given me a sense of purpose in my personal life and while it can be stressful at times, knowing that I’m helping the epilepsy community and knowing that my supporters are all encouraging me allows me to feel a sense of accomplishment. Hey, I’ve even stopped wasting my life in front of the tv and using that time to do something worthwhile instead.

What are you most looking forward to about your upcoming adventure?

I’m looking forward to seeing a change in some local groups and having the awareness and acceptance around epilepsy spread further into the community, especially during March Epilepsy Awareness month. I’m very excited about completing the Great Wall trek with my dear friend Carly by my side and with my beautiful family, caring friends and kind supporters cheering me on in spirit.

What advice would you offer to other people looking to complete a challenge like this?

Believe in yourself and your cause then others will follow. You’d be amazed at the support network that you have if you just reached out. Focus on the positives this adventure will bring to the people you are supporting and remember that together we can all make a difference, no matter how small it may seem.

Also don’t be afraid to ask questions and advice from your adventure guide and charity contact – I practically spammed them daily with every question under the sun when I started out. They will do everything they can to guide you along this exciting and fulfilling journey. It’ll be stressful at times but it will also be a lot of fun! Good luck!

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Become our Adventurer of the Month to win a $100 Paddy Pallin voucher

Take a picture whilst on your adventure or when you’re training and use the hashtag #IveBeenInspired and your adventure hashtag. The most exciting use of the hashtag, with an adventure, and fitness focus will be our Adventurer of the Month – it’s that easy!