Jason Carlin

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. 

OG to Torquay

Sunday 23rd Oct
Most of the way had walking tracks, but I had to call a for lift, after not being able to cross the creek between Breamlea and Point Impossible.

OG to Torquay

Sunday 23rd Oct
Just under 25km in just under 5 hours

OG to Torquay

Sunday 23rd Oct
I had to walk along 13th beach for about 5km due to no walking track.

OG to Torquay

Sunday 23rd Oct
Leaving from The Dunes Cafe. Elijah, Zoe, Mum and Dave were there to see me off

Day 23

Sunday 23rd Oct
When signing up to do my first Walk for Epilepsy, I had three goals. 
1. Raise as much money as I could for the Epilepsy Foundation - So far $7218 has been raised and I’m actually overwhelmed with the support. I started out hoping to get $1000 and that was smashed in 2 days. 

2. Include Xavier in as many of my walks as possible - I think about 70% of the kilometres, Xav has been with me in the pram. 

3. Finish off the 25 days with a walk from Ocean Grove to Torquay - Today I left Ocean Grove at 8:30am and made it to Torquay in just under 5 hours.

Again thank you so much to everyone that has donated. 

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. 

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

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. 
I was home late tonight, but Xavier, Elijah and I managed a quick walk to the supermarket to pick up some essentials. 

Day 19

Wednesday 19th Oct
Xavier loves getting outside. As soon as I got home tonight, I asked him if he wanted to go for a walk. He quickly went running to the door. Xavier has to wear sunglasses at all times when outside, due to the risk of a seizure from looking directly into the sun. But he knows that when he puts his sunglasses on, that means he’s going outside and he gets really excited.

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. 

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.  

Day 17

Wednesday 19th Oct
Xavier and I got out for a 3km walk after I got home from work. 

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. 

Day 15

Monday 17th Oct
Zero kms again as I was in Melbourne all day. 

Day 14 - Donation goal hit!

Friday 14th Oct
And again due to the awful weather, no kays were completed. 
But the donation target was hit! Again thank you so much to everyone that has donated. You guys are making a difference!

Day 13

Friday 14th Oct
Again due to non stop rain I was unable to walk any kilometres today. 

Day 12

Thursday 13th Oct
I wasn’t able to get out for a walk today due to the rain. 

Walk/ride/scoot

Tuesday 11th Oct
Zoe, Elijah, Xavier and I did a quick 2km tonight around the estate before bed.

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. 
After a long day with appointments, he had a seizure about 4pm. After recovering well and having some dinner  Xav, Elijah, Zoe and I were able to get out for a 2km walk/ride/scoot around our estate. 

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. 
I then had to drop Tash’s car off for a service in town. I thought I would see how far I could walk before before calling Tash to pick me up. I ended up making it to Leopold, which was 12km. The last 2km were a struggle, but they were also up hill. 
Overall I punched out 16km for the day. 

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. 

Day 8

Sunday 9th Oct
I was able to take Xavier out for two seperate walks, totalling 5km. 

Day 7

Saturday 8th Oct
Managed to get out for a 3km with Xav in the morning. 

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. 

Day 5

Thursday 6th Oct
I wasn’t able to get a walk in yesterday due to the rain. 

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.
Managed a 5.5km walk around our estate tonight after the kids went to bed. It is meant to be quite wet the next two days, but hopefully I’ll be able to get a few kms in. 

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.

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. 
I was able to clock up 4km today on Day 2. Tash was in Tassie this weekend and it’s always tough to motivate both Elijah and Zoe to get out for a walk with Xav and I, without first negotiating either a supermarket trip for a treat, or a park visit. So today we managed both. 

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. 
I took Elijah to the monster trucks today in Melbourne, so I was able to get started with 3km due to parking so far away from the stadium. 
Xavier had another seizure just before bed time. Once recovered, he was very grumpy and tired. Hopefully after a good nights sleep and we can get out for a walk tomorrow. 

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