My Activity Tracking
866
kms
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
Day - 2
Wednesday 12th Oct
Day - 1
Wednesday 12th Oct
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.Thank you to my Sponsors
$1.02k
Lucy
$1,000
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
$1,000
Nexon
Your donation was proudly matched by Nexon.
$500
Nick Benham
Keep up the good work From Nick and the team from Direct Automation.
$271.14
Day 29 Crew
$257 donation from the crew on Day 29.. thank you so much!!
$263.75
Kylee Freeman
Legend
$250
Screenlab
Lets go Raffy!
$250
Nexon
Your donation was proudly matched by Nexon.
$250
Fitprint
We love you Raffy, lets gooooooo!
$250
Nexon
Your donation was proudly matched by Nexon.
$211
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.
$211
Hani
$211
Anonymous
What ever we can go to help support you reach that goal our team at EMF are behind you. Kylee and Scott Freeman - EMF
$129.77
Raj Balaguru
You will make 10000 and become Ironman!
$105.50
Karl Merker
$105.50
Liz Rodgers
$105.50
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!
$105.50
Tania Widmer
Fantastic fundraising effort! Sending you best regards and hopes for continued strength and bravery to manage all the challenging times…
$105.50
Cheryl Keid
$105.50
Tracey Ellis
$100
Rowena Gill
$100
Trail Brew
Keep digging deep Rafa! You’ve got this!
$100
Jazz
Always happy to support you on your crazy, yet inspiring journies my friend. 💪🏼
$100
Chris Obra
You’re an inspiration Rafa!
$100
Lauren Gill
Super mum and dad! Wishing your family all the best
$52.75
Colin
You got this buddy!
$52.75
Rhys Horne
Kia Kaha Rafa, me tou whanau hoki! Stay strong Rafa, and also your family.
$52.75
Nona
Go Rafa
$52.75
Matt Cameron
$52.75
Kathy Rundle
Amazing Rafa!
$52.75
Pfm
Love your work brother
$52.75
Bec Marsh
Your commitment to awareness and research is truly commendable. You are very inspiring! Love and best wishes to gorgeous wee Sofi.
$52.75
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 !!
$52.75
John & Tez Brooks
Lesssgooooo baby!
$52.75
Madeleine Flodin
$52.75
Sara
Fantastic achievement and for spreading the message about epilepsy Best to you and your family xx
$52.75
Nat Micallef
Get it, Rafa!
$50
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.
$50
Nathan Hoffman
Amazing effort mate
$50
Amanda Dansky
What a great cause! Wishing you all the best!
$50
Anonymous
Get it Rafa Tashy💪🏻Give it a squirt ✊🏻
$42.20
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 🙏🏽
$31
Ben Marlow
Rapidos amigo 🔥 $31 for 31 days let’s gooooo
$30
Sarah Batt
$26.38
Anonymous
$26.38
Emma Mourilyan
$26.38
Rob Rameka
Kiwi Bro!!!
$26.38
Matt Crawford
Legendary effort, Rafa! SO proud of you, mate!
$26.38
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!
$26.38
Tara Lister
Awesome stuff Rafa!
$26.38
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.
$26.38
Sherrilyn Sande
You are an inspiration to many parents & you have my upmost respect. It’s a beautiful thing your doing
$26.38
Rafa Garcia
$26.38
Julie A
I hope you exceed your fundraising goal Rafa, I’ll be cheering for you all the way.
$26.38
Collette Morris
Let’s go Rafa!! So inspiring 😎
$26.38
Samara White
Sending much love to you and your beautiful family! So incredibly strong x
$26.38
Mari
🥰
$26.38
Mad Doggy Dog
Get it my little playboyyy!!! 😘
$26.38
Alex Graudins
Legend! Good stuff!
$26.38
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.
$26.38
Markus Forest And Shirley Faye Evans
$20 from my Mum, Shirley Faye Evans and $5 from me.
$26.38
Karen
Best wishes to Sofia and food luck with your challenge.
$26.38
Rain Fuller
Sending all my support for your daughter
$25
Laura Brown
$25
Claire Sanders
All the best on your sprint tri challenge! Raising awareness for a great cause 🫶🏻
$25
Ally Krupinski
Greatly inspirational Rafa
$25
Meredith Gardiner
Sending hope to your daughter and family for a bright future. Congratulations on achieving your goal.
$21.10
Rita Marshall
- lets go RAFA! keen to get some training in w the RFR fam, all here for you!
$21.10
Jackie Mather
Go for Gold
$21.10
Trent White
$20
Jemille Isaac
Go legend
$20
Tilly Gee
Congratulations on an amazing effort so far, Rafa. Your positivity and commitment to the cause is truly inspiring!
$20
Kylie Preece
$15.83
Angela Anzini
$15
Amy Pottage
$10.55
Jesse Astill
🤍
$10.55
Lindy Singleton
You are a legend. Love your work for such a great cause xx
$10
Anonymous
$5.28
1300 437 453
walk@walkforepilepsy.org.au
Well done you awesome human being.