Rafa Garcia

My Activity Tracking


My target 773 kms

I’m taking part in Walk for Epilepsy around Australia because...

In December 2020, at 8 months of age, Sofi had her first seizure. Thankfully she was napping in her mum’s arms so we were able to call the ambulance immediately and they were with us in 7 minutes. The paramedics weren’t able to stop the seizure and Sofi was taken to hospital, lights and sirens. In ER, the team of doctors were finally able to stop the seizure after 1 hour! The most terrifying hour of our lives. We were told it was a febrile convulsion and it may never happen again.

Less than 2 months later she had another one. 40 minutes long and it was again stopped in ER. 

We were fortunate enough to get a fit-in appointment with the only paediatric neurologist on the Gold Coast not long after and, amongst regular prolonged seizures, he sent her blood samples to the USA for special genetic testing. In May 2021, while intubated in ICU after a 1 hour and 20 minute seizure, we received the diagnosis of epilepsy. Not just epilepsy but a rare and catastrophic type of epilepsy called ‘Dravet Syndrome’, caused by a ‘de novo’ SCN1A gene mutation.

Since the first seizure to now, we’ve called the ambulance more than 150 times. We’ve been to ER almost 100 times, and ICU twice. We’ve had to administer emergency meds more times than we can count. And we’ve spent all this time working to find the right combination and dosage of anti-epileptic drugs to minimise her seizures.

We’ve also had to get prescription medication to help with her associated sleep disorder. 

Our lives are so different than we ever could have imagined when bringing this beautiful girl into the world. We carry emergency meds at all times, we avoid situations involving heat, bright lights, over stimulation, germs and sugar (all triggers). We have to make allowances for Sofi to catch up on sleep if she has a bad night because sleep deprivation is also a trigger for her.

We co-sleep so if she has a seizure during the night we’ll be able to wake up and leap into action. 

Aside from all this, we try to give her the most normal, fun-filled life we can, taking it one day at a time and living in the present.

Sofi goes to daycare full time and LOVES it! Little Scholars, Nerang are amazing with her. A group of staff underwent seizure management training so they know exactly what to do in case of emergency. She loves her weekly swimming lessons, and is kicking goals in every part of her life.

We have hope for the future with gene therapy being developed in the USA; and new medications due for approval in Australia next year- both helpful for Dravet Syndrome. We want to ensure research continues moving forward for Dravet and for Epilepsy in general so we can work towards finding a cure. Epilepsy affects a quarter of a million people in Australia and touches the lives of not only those who have it but also their loved ones.

Please support me to raise funds and awareness for Epilepsy QLD by donating and/or sharing our story. Thank you so much in advance, we truly appreciate it.

My Achievements

First kilometre logged

50% of distance reached

100% of distance reached

First donation

50% of donation target reached

100% of donation target reached

Travel the distance of this SA hike

Travel the distance of this ACT hike

Travel the distance of this TAS hike

Travel the distance of this QLD hike

Travel the distance of this NSW hike

Travel the distance of this NT hike

Travel the distance of this WA hike

Travel the distance of this VIC hike

Shared page

My Updates

Day 12

Wednesday 12th Oct
Sprint Triathlon streak # 12.

Today was a better day than yesterday! My back is sore and my immune system is very low still but we will show up everyday anyway! I had the pleasure of these boys’ company - @nickbeno and @kayneaden1 - supporting me this morning. Thank you guys I really appreciate it.

So far this month I have done:
Swim 9km
Bike 240km
Run 60km

Every 33 minutes 1 person in Australia is diagnosed with Epilepsy. I have done my sprint triathlons on average in around 1h:40m. It means in the time that I do the triathlon for 3 people their life is turned upside down.  Now can you please take a minute to imagine. If one of those situations happened to you how difficult your life would be (losing their license, losing their independence, losing their jobs, losing love, etc.) 

Let’s support this cause raising awareness about Epilepsy and hopefully we can give better opportunities to people who live with this condition and possibly find a cure. 

Thank you for your support this month. We really appreciate it with all our hearts. 

Day - 2

Wednesday 12th Oct
Day 2 of Triathlon Done!

Today, I decided to ride inside because the roads were a bit wet and the weather condition wasn’t the best to ride outside, but it was a really good decision! 

I rode in the outdoor area at @emfpc and it was so much fun. 

My family (@mali_runs / Sofi and Bronte) came today to support me it was so nice to have them there plus I had the pleasure to run with my very good friend @davidsinton and his son @the_boy_runner (the fastest 9 year old half marathon runner in Aus/NZ) what a legend. 

Let’s talk about my main reason of why I do this Challenge, Sofi was diagnosed with Epilepsy (Dravet syndrome) when she was 1 yrs old.

1st tonic clonic seizure 19/12/20 it went for 1 hour. Caused by hand, foot and mouth (first virus that she got) She was 8months old.

2nd tonic clonic seizure 07/02/21 it went for 40 minutes. Cause by rhinovirus.

3rd tonic clonic seizure 26/02/21 it went for 40 minutes. Caused by rhinovirus.

4th -5th focal seizures 15/03/21 they went for 20 and 25 mins respective. 

6th Tonic clonic seizure 17/03/21 40 mins Jerking and 1 additional hour non responsive finished in Intensive care- intubated. She was 11 months old.

7th tonic clonic seizure 3/4/21 -20min

8th we don’t know 6/5/21 inconsolably crying and non-responsive for 35 minutes

9th tonic clonic seizure 7/5/21

10th focal seizure 12/5/21 - 5 minutes

11th focal and tonic clonic seizure 13/05/21

12th and 13th focal seizure 18/05/21

14th focal seizure 19/05/21 we couldn’t stop it and she was in Intensive care unit again at 1yr and 1 month old. 

It took us 5 months and 14 seizures to get a diagnosis. We were so lucky that she was put on the right medication because it could have been worse. 

Since her diagnosis she has had 120+ seizures and we can’t control them. They will come anytime. We have learnt some of her tiggers but sometimes we don’t have any idea why, when she will have a seizure! 

That is my strong WHY. I am pushing my body and using my time to raise awareness about epilepsy so we can find a cure for this condition! 

Day - 1

Wednesday 12th Oct
Day 1 of 30 sprint triathlon is done! 

Let talk about epilepsy (in particular Dravet Syndrome). One of the biggest and most common challenges for people who live with Dravet syndrome is sleep disorders! Every night, we have to give Sofi melatonin (slow release) and sleep medication 30minutes before going to bed, so Sofi can fall asleep. And if she wakes up we have quick release melatonin (but it doesn’t seem to do much tbh).

About last night! Sofi went to bed around 9pm and woke up at 10pm then slept another 30minutes until 11pm then she was awake until 4am.
Then she slept until 7:20am and woke up ready to start the day!!
As a parent it’s really hard because we still have to function at work and in life in general. This happens at least once a week for us.

There are many families who deal with this every day of their life without any support and for that reason (even when according to Garmin sleep tracking I slept 3hr:19min with 2 minutes deep sleep and 23 minute awake) I still got up and completed my first triathlon of the challenge to create awareness about epilepsy and let other families know that we are all together. 

If you know any family who deal with this, please support them any way you can. 

📸 @dose_lifestyle

2nd year! Lets get bigger!

Sunday 14th Aug
I am super excited to take part in ‘walk for epilepsy’ for the 2nd year in a row.  Last year I completed 31 Half Marathons in 31 days. And raised over $5000. 
This year, I would love to raise $10000 for epilepsy QLD by completing 30 sprint triathlons. Something I’ve actually never done before…
A sprint triathlon consists of:
750m Swim.
20km bike.
5km run.
Also, If I raise the $10000 before day 29. I will complete a full ironman on day 30.  
That is:
3.9km swim.
180.2km bike.
42.2km run.
I will complete the triathlons at EMF recovery center - Nerang 
Thank you to my main sponsors Fitprint and does_lifestyle. If you are keen to support me to raise awareness for epilepsy please DM me and/or share this post with friends and Family. 

Thank you to my Sponsors



Well done you awesome human being.


Antonio Mercuri

Much love from GV Property Group And take it easy please - that’s too much excessive exercise. Take care of yourself too X



Your donation was proudly matched by Nexon.


Nick Benham

Keep up the good work From Nick and the team from Direct Automation.


Day 29 Crew

$257 donation from the crew on Day 29.. thank you so much!!


Kylee Freeman




Lets go Raffy!



Your donation was proudly matched by Nexon.



We love you Raffy, lets gooooooo!



Your donation was proudly matched by Nexon.


Jem Alex

You’re doing a wonderful thing here, battling through such a difficult situation but instead of collapsing, you’re turning it around to what you can do for others. Rockstars! Sending strength and the biggest of love.





What ever we can go to help support you reach that goal our team at EMF are behind you. Kylee and Scott Freeman - EMF


Raj Balaguru

You will make 10000 and become Ironman!


Karl Merker


Liz Rodgers


Virtue Health Australia Pty Ltd

It’s taken me tooooo long to donate. You are an inspiration Rafa (& fam!). Seizures can’t hold anyone back! I know your little lady will be so damn proud of you ahead. Big hugs and to the fam also. What a team you all are!


Tania Widmer

Fantastic fundraising effort! Sending you best regards and hopes for continued strength and bravery to manage all the challenging times…


Cheryl Keid


Tracey Ellis


Rowena Gill


Trail Brew

Keep digging deep Rafa! You’ve got this!



Always happy to support you on your crazy, yet inspiring journies my friend. 💪🏼


Chris Obra

You’re an inspiration Rafa!


Lauren Gill

Super mum and dad! Wishing your family all the best



You got this buddy!


Rhys Horne

Kia Kaha Rafa, me tou whanau hoki! Stay strong Rafa, and also your family.



Go Rafa


Matt Cameron


Kathy Rundle

Amazing Rafa!



Love your work brother


Bec Marsh

Your commitment to awareness and research is truly commendable. You are very inspiring! Love and best wishes to gorgeous wee Sofi.


Cheryl Alma

There is no greater gift one can give than to love as fiercely and intentionally as you are in this moment. Cheering you on Rafa!! Take it all the way !!


John & Tez Brooks

Lesssgooooo baby!


Madeleine Flodin



Fantastic achievement and for spreading the message about epilepsy Best to you and your family xx


Nat Micallef

Get it, Rafa!


Ryan Mulheron

I grew up with Elipepsy myself Rafa. Diagnosed at 7 years old and grew out of it at 19 and off all medication by 23. The doctor said I wouldn't grow out of it. We proved them wrong. Keep looking after your daughter Sofi and stay positive for her. All the best to you and your family champion you got this.


Nathan Hoffman

Amazing effort mate


Amanda Dansky

What a great cause! Wishing you all the best!



Get it Rafa Tashy💪🏻Give it a squirt ✊🏻


Louella T

Praying you and your family find a cure for beautiful Sofi and many others like her. PS. I’ve loved having some swimming mates in the pool at 5am. Much blessings 🙏🏽


Ben Marlow

Rapidos amigo 🔥 $31 for 31 days let’s gooooo


Sarah Batt




Emma Mourilyan


Rob Rameka

Kiwi Bro!!!


Matt Crawford

Legendary effort, Rafa! SO proud of you, mate!


Carol Barrett

You are Awesome Rafa Thank you for what you are doing for Epilepsy Qld I have lived with Epilepsy since the age of 17 & unfortunately still today there is a huge Stigma attached to it!


Tara Lister

Awesome stuff Rafa!


Monica Bailey

You amaze me Rafa! Your beautiful family are so lucky to have you and your willingness to put your body through hell to raise funds for important research.


Sherrilyn Sande

You are an inspiration to many parents & you have my upmost respect. It’s a beautiful thing your doing


Rafa Garcia


Julie A

I hope you exceed your fundraising goal Rafa, I’ll be cheering for you all the way.


Collette Morris

Let’s go Rafa!! So inspiring 😎


Samara White

Sending much love to you and your beautiful family! So incredibly strong x





Mad Doggy Dog

Get it my little playboyyy!!! 😘


Alex Graudins

Legend! Good stuff!


Kylie Harmer

All the best on a very noble and extremely tough challenge you have set yourself. I hope you raise further awareness and much needed funds along the way.


Markus Forest And Shirley Faye Evans

$20 from my Mum, Shirley Faye Evans and $5 from me.



Best wishes to Sofia and food luck with your challenge.


Rain Fuller

Sending all my support for your daughter


Laura Brown


Claire Sanders

All the best on your sprint tri challenge! Raising awareness for a great cause 🫶🏻


Ally Krupinski

Greatly inspirational Rafa


Meredith Gardiner

Sending hope to your daughter and family for a bright future. Congratulations on achieving your goal.


Rita Marshall

- lets go RAFA! keen to get some training in w the RFR fam, all here for you!


Jackie Mather

Go for Gold


Trent White


Jemille Isaac

Go legend


Tilly Gee

Congratulations on an amazing effort so far, Rafa. Your positivity and commitment to the cause is truly inspiring!


Kylie Preece


Angela Anzini


Amy Pottage


Jesse Astill



Lindy Singleton

You are a legend. Love your work for such a great cause xx