My Activity Tracking
114
kms
My target 150 kms
I’m taking part in Walk for Epilepsy around Australia because...
My son Xavier has a form of epilepsy called Dravet Syndrome. He’s sweet, cheeky, affectionate, and we recently celebrated his third birthday. Like many other kids his age, Xavier LOVES splashing in water at the beach, playing basketball and running around with his siblings.
When Xavier was 7 months old, we noticed that he’d started doing some strange jerking movements in the bath. With my wife’s health background, she immediately suspected this was seizure activity and we were very frightened. After multiple presentations to our local emergency department, these were eventually confirmed as myoclonic seizures on an EEG at around 8 months. He had up to 100 of these seizures a day, which then progressed to prolonged clonic and hemiclonic, generalised tonic-clonic (twice requiring intubation), atypical absence, focal impaired awareness, and absence seizures.
Soon after, Xavier was diagnosed with Dravet Syndrome. He has a de novo, truncated mutation of the scn1a gene. We were utterly devastated when we received Xavier’s diagnosis. We grieved deeply for the life he wasn’t going to have, and for the life we thought our family would have. It was a tough first few months.
Xavier’s diagnosis of Dravet Syndrome has had a profound effect on our lives. His two older siblings have witnessed very frightening situations during Xavier’s seizures. His diagnosis came in the midst of the COVID pandemic, which added to our feelings of isolation and devastation. We have had to adjust to a new life and new hopes for our and Xavier’s future. My wife took extended leave from her role as a nurse to care for Xavier full-time. I was self employed at the time, so we also decided stepping away from this was best for our family. We weren’t prepared for the financial impact of living with a child with a disability.
We live with constant anxiety that Xavier will seize, or that he will be one of the 15-20% of people living with Dravet Syndrome that will die prematurely. We have no way of knowing what the future looks like.
However, his diagnosis has also taught us to focus on the joy in everyday life. Xavier is incredible, and we are truly blessed.
We also have a fantastic community of friends and family. They help by supporting us emotionally, caring for our children, helping with housework, dropping off meals. We are forever grateful to have these beautiful people in our lives.
My advice to other people living with epilepsy would be to not be afraid to reach out to family and friends for practical help and support and to get educated by contacting places like the Epilepsy Foundation for up-to-date, evidence-based information. We’ve also found great support in reaching out to Dravet Syndrome families in Australia, meeting up for coffees, and sharing experiences with people who truly understand.
Whilst Xavier's seizures will never be fully controlled and he has started to show signs of developmental delays and speech regression, he communicates beautifully and is a happy little boy.
I want to raise money and make a difference for people living with epilepsy. Please help me by giving whatever you can using the 'Give Now' button. The more people that know about the walk, the greater the impact, so please also spread the word by sharing our page with your friends and family. Thank you in advance for your generosity, it means a lot!
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 24
Monday 24th Oct Just a short 2km walk around the estate tonight. My legs were definitely getting a bit sore by the end of the day. Share
OG to Torquay
Sunday 23rd Oct
OG to Torquay
Sunday 23rd Oct
OG to Torquay
Sunday 23rd Oct
Day 23
Sunday 23rd Oct When signing up to do my first Walk for Epilepsy, I had three goals.
Day 22
Saturday 22nd Oct We were able to complete a few small walks today totalling 8km. And the total raised is just under $7000, which I actually can’t believe. Just a few days left, so I’ll get another post up tomorrow to get that total up. Share
Day 21
Saturday 22nd Oct Elijah and Zoe’s school had an Art show with all the kids artwork on display. So instead of driving there, we walked. It was a beautiful night for a stroll, although Zoe’s complaining and constant nagging for me to carry her made it feel like 500km instead 5km Share
Day 20
Thursday 20th Oct Today was double donation day and I’m amazed at the reaction my post received. Thank you to everyone that donated today and thank you to everyone that shared my post. Over $6000 has now been raised for The Epilepsy Foundation.
Day 19
Wednesday 19th Oct
Day 19
Wednesday 19th Oct Today was a beautiful day and we were able to get out for a 3km walk just before Xavier went off to bed. Share
Day 18
Wednesday 19th Oct Unfortunately no walk today. I didn’t get home from work until late and then Xavier had a seizure, so he was in bed early. Share
Day 16
Monday 17th Oct Xavier and I got out for three short walks. He was very tired today. We woke early, so he was back in bed about 10:30am. But for some reason he only slept half of what he usually does. So we had to put him back to bed about 2:30pm for a second sleep. Share
Day 14 - Donation goal hit!
Friday 14th Oct And again due to the awful weather, no kays were completed.
Walk/ride/scoot
Tuesday 11th Oct
Day 11 - RCH visit
Tuesday 11th Oct Xavier had an appointment at the RCH today with immunologist because of a strep infection he had two months ago. They also confirmed he is allergic to avocado and kiwi fruit, adding to the already confirmed egg and peanut allergies.
Day 10 - Big Walk
Monday 10th Oct Today I didn’t work and was able to get Xavier out for a quick 2km walk before dropping Elijah and Zoe at school. My aim is to finish off the month with about a 20km walk from Ocean Grove to Torquay, so the morning was spent checking from 13th Beach Rd to Point Impossible, to find the best route.
Day 9 - 12km day
Sunday 9th Oct I was able to complete three good length walks today. 4km in the morning with Xavier and then another 4km with him in the afternoon. They key to getting a longer walk is keeping him happy with snacks to munch on. After the kids went to bed I got 4km more with a walk around Barwon Heads. Share
Day 6
Thursday 6th Oct Zoe had some friends over after school today for her birthday party. So Xavier and I got out of the house for a 3km walk while the sun was still shining. Share
Day 4 - Zoe’s Birthday
Tuesday 4th Oct Today was Zoe’s 6th birthday. But she wasn’t feeling well this morning and didn’t end up going to school. We had to postpone her party until Thursday.
Day 3 for 3km
Monday 3rd Oct I was able to get Xavier out after work for a few laps around the beautiful walking track near our house in Ocean Grove. Share
Target Hit!
Sunday 2nd Oct Again thank you to everyone that has donated, the goal has been hit in two days, so I’m going to up the target to $3000.
Thank you!
Saturday 1st Oct Thank you so much to everyone that donated today on day 1. 80% of the target has already been reached.Thank you to my Sponsors
$500
The Williams Family
$400
Torquay Larder
Lots of love to you and the family. Travis, Lauren, Grace and Noah
$263.75
Phil Sadler
$263.75
Anonymous
$211
Anthony Doyle
$211
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$211
Jasna Giebeler
Love you love Xav love Tash and the fambam. You go Jas. Very proud. Jas xxx
$200
Ingrid And Brad
Go Jase and Xav! We love you all x
$200
Ben And Mel
Best neighbours, love you all to bits, amazing thing to do for an amazing cause, always thinking of you.
$105.50
Grant Walker
Great work Jas!
$105.50
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$105.50
Leonie Mahar
$105.50
Mike Kelly
Go Jase and Xavy 🥰❤️
$105.50
Fozz And Jayne
Bloody great effort, Jase! Keep it up x
$105.50
Jess Marsland
💜 💜💜
$105.50
Anonymous
$105.50
Evan Smith
$105.50
Rach And Casey Knight
Better late than never (sorry!) Massive achievement guys and what a walk today! You are absolute superstars x
$105.50
Anthony Jensen
Keep it up Jase, love what you are doing for Xav and other people with epilepsy!
$105.50
Kevin & Vicki Matthews
$105.50
Damian And Kura
Fantastic effort Jas & Xav ❤️
$105.50
The Moody's
$105.50
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$105.50
Mark Simons
Super effort Jason
$105.50
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$105.50
Fraser
Hi Xav, I’ve never met you but you feel like my Dravet brother. Hopefully with more support things will improve for us. More fun and less seizures. 💜 Fraser
$105.50
Oliverbirch
Xxx
$105.50
Mike Kelly
We’re very proud of you Jase and Xavy is in our thoughts every day ❤️
$105.50
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our national supporting partner Nexon Asia Pacific & our state supporting partner Seer Medical (Aust). Thank you for your support.
$100
The Gaffney’s
💜💜💜
$100
Metricon Social Club
$100
Michael Young
$100
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$100
Amanda And Shane Barry
So proud of you guys, you amaze me everyday and we are always here for you ❤️
$75
Kerry Carlin
We are here for you all always and hope you get to start your walk for Xavier ❤️
$55.55
Vita And John
💕
$52.75
Ricky Bilston
$52.75
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$52.75
Karyn Bourne
All our love
$52.75
Anonymous
$52.75
Marie Mcconnon
You are all amazing
$52.75
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$52.75
Helen & Daryl Hurst
Thinking of your all Jason 💗
$52.75
Teresa Wiggers
Our love always to our beautiful family in Ocean Grove ♥️
$52.75
Amanda Menheere
$52.75
Trictia Cleary
Well done Jason. I can only imagine the impact on your family. To fit this walk/fund-raiser into your life is inspiring, while also creating awareness. Thinking of you all, especially Xavier. Xx
$52.75
Michael Carrato
It's not a huge amount but I think you have done a great thing here! Well done mate.
$52.75
Anonymous
Congratulations Jason on a wonderful effort for a great cause.
$52.75
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$52.75
Jen & Megan Walsh
$52.75
Matt & Heather Harbison
Amazing work!
$52.75
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$52.75
Dion Planken
Huge effort Jase! Well done mate
$52.75
Adrian Hildebrand
fantastic Jason all the best
$52.75
Fiona Kitching
$52.75
Jason Carlin
$52.75
Ted Walliss
$52.75
Shelley &nick Corbett
$52.75
Peter Fusea
$52.75
Dave Mcgilligan
$52.75
Anonymous
$52.75
Bazz & Candy
Great work mate. Much love to you and Tash.
$52.75
Beck, Brett, Ollie And Abby
Go Jason and the family team!!
$52.75
Stacey Hanson
$52.75
Shasta O’loughlin
Go Jase! Inspiring stuff.
$52.75
Beck And Paul Moorfoot
💜
$52.75
Tyson Priddle
You guys are amazing parents and he's an amazing little dude. We'll make sure we get some KMs in as well. 🚶
$52.75
The Mccallums
Love to you all.
$52.75
Janet Novak
💜
$52.75
Ben Harding
Good work mate 👍🏻
$52.75
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$52.75
Sophie, Anna & Tom Moorfoot
♥️
$52.75
Karen Dell
$52.75
Peter Nestor
$52.75
Marcus & Jess Mcwilliam
$52.75
Anonymous
You are inspirational Jason
$52.75
Meg Carlin
Sending love to you guys always xox
$50
Michael Cecil
$50
Wendy Richardson
Wishing you all the best with your walk Jas xx
$50
Cameron & Alicia Finn
💜xo
$50
Verity Stubbs
Go Jase!!
$31.65
Anonymous
You are an amazing role model for your beautiful children !
$31.65
Libby Moorfoot
$31.65
Adelle Van Der Linden
$31.65
Amy & Evan
Go Team Jase & Xav!
$26.38
Darren Brennan
Hey Mate, Well done on the fund raise. My son too was diagnosed with Epilepsy. His was juvenile nocturnal and seems (fingers crossed) to grown out of it. Hoping for similar luck for your son. Take care of your little man and well done. Cheers Darren
$26.38
Steph Mcwhae
$26.38
Clare Barnes
Well done Jase, inspirational!! All the best superstar Xav 🤍
$26.38
Karen Durosomo
$26.38
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$26.38
Anthony Giglio
Hi mate, fantastic achievement. Well done. Nothing but the best for you and the family
$26.38
Suzi Duncan
$26.38
Kayla Wk
$26.38
Elle Cussen
Wishing you all the best Jason.
$26.38
Anita Mullick
$26.38
Michael Maney
Great to see Jason. Well dome mate!
$26.38
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$26.38
Ben Carlon
Huge effort - all the best to Xavier and the Carlins!
$26.38
Melanie Davies
$26.38
David Nguyen
$26.38
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$26.38
Caterina Cavallaro
$26.38
Nexon Asia Pacific & Seer Medical (aust)
Your donation was proudly matched by our supporting partners Nexon Asia Pacific & Seer Medical (Aust). Thank you for your support.
$26.38
Greg
Well done mate, no doubt a great cause for something very close to your heart. All the best with the walk, glad to see you have been able to raise beyond the goal. Hope the boots don’t pinch too much on Monday!
$25
Gaye Hirst
$25
Nikita Connell
Great cause Jase, keep up the great work!
$25
Kylie Jones
Great work Jason, keep up the amazing work!
$25
Marg Guthrie
Great effort Jason 💙
$25
Doris James
Great effort. What a wonderful dad
$20
Leigh Fitzpatrick
Great work Jason
$10.55
Julie Guilmartin
$10.55
Hannah Banbury
$10
Jake Farrugia
Good on you mate! All the best
1300 437 453
walk@walkforepilepsy.org.au
💜💜💜