Jason Carlin

My Activity Tracking

154
kms

My target 200 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 just turned 4. 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.  

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

Ready set go!

You're on your way to becoming an Epilepsy Champ! Signup complete

Sharing is caring

Let the world know that you're helping those living with epilepsy on your socials

Back yourself

Self donate to show your friends and family how its done

First donation

Got your first donation! Well done!

Halfway Donation Milestone

You've hit the half way mark for donations! Keep up the good work

Smashed it!

You've hit your goal! We couldn't be more proud of you

First km complete!

Well done! Keep the momentum going!

Half way there

You've reached the halfway mark of your challenge, keep pushing forward!

You did it!

You've smashed your goal! We couldn't be more proud of you

$500!

Thankyou, you've raised $500!!! A Walk for Epilepsy pack is coming your way!

$1000!

Thankyou, you've raised $1000! You're in the draw to WIN an Apple iWatch

$2000!

Thankyou, you've raised $2000! You're in the draw to win a $1000 Rebel Sports Voucher

My Updates

Day 29

Sunday 29th Oct
Tash and I were joined by Tyson and Kerrin for a 16km walk from OG to Queenscliff to finish off this years Walk for Epilepsy. It was hard going for a bit, but the beer tasted fantastic at the end.

Day 28

Sunday 29th Oct
Today in between watching Basketball, we went to the local park.

Day 27

Sunday 29th Oct
Today Tash, Xavier and I went to an Epilepsy Action Australia event in Melbourne. We caught up with a few other families that have with children with Dravet. The highlight was meeting Lachy Wiggle.

Day 26

Sunday 29th Oct
Xavier and I went for a 4km ride around the estate after work tonight. 

Day 25

Wednesday 25th Oct
With the awful weather continuing I was only able to get 2km in today with a quick walk to the supermarket with Xavier. 
Today was meant to be the last day, but with many missed days due to bad weather, I’m going to continue until Sunday. 
I’ll be walking from Ocean Grove to Queenscliff to finish off Walk for Epilepsy for 2023. 

Day 24

Tuesday 24th Oct
Due to the high winds today, I wasn’t able to get Xavier out for a ride after work. I did manage 8km after the kids went to bed. I really wanted to keep going, but I’m starting to get a sore left achilles. 

Day 23

Monday 23rd Oct
4km ride with Xavier in the trike after work and then a 7km walk tonight after the kids went to bed. 
I’m determined to get in at least 10km per day this week to make the 200km target by Sunday. 

Day 22

Sunday 22nd Oct
Today Elijah and I headed to Melbourne to watch an NBL game. I parked on the edge of the city, so we could get a good 7km round trip walk.

Day 21

Sunday 22nd Oct
Today we spent the morning at The Geelong Show and the kids had a ball. In the afternoon I took Xav for a walk to the supermarket. Total was 6km for the day.

Day 20

Saturday 21st Oct
Just a quick 3km round trip to the supermarket tonight. 

Day 19

Thursday 19th Oct
Today was double donation day and I’m overwhelmed by the support from family and friends. Almost $4000 was raised today alone. On the walking side of things, I managed 4km whole playing 9 holes of golf with a few mates.

Day 18

Wednesday 18th Oct
Went for a swim at the local pool tonight. I’m trying to do a half hour swim at least once a week going forward. 

Day 17

Tuesday 17th Oct
Another walk around the block for 5km today.

Day 16

Monday 16th Oct
Xavier has had a rough couple of days with a seizure yesterday and one again this morning. Sometimes when he’s getting sick, the first sign is a seizure. The photo is him laying on me while recovering this morning. Tonight I went for a 7km walk around our estate.

Day 15

Sunday 15th Oct
A quick 3km ride this morning before spending most of the day at the Ocean Grove Primary School Apple Fair. Zoe and Elijah had a great day!

Day 14

Saturday 14th Oct
After some awful weather the past few days, I was able to get out and get some kms done. 3km walk with Elijah and Zoe on their scooters near Clifton Springs in the morning. Followed by a 8km ride with Elijah and then a 2km walk with Xav to the supermarket.

Day 9

Monday 9th Oct
Played Golf with two mates after work today. It was great having a swing and got in 6km around the course.

Day 8

Sunday 8th Oct
Another ride with Elijah around the Nature Reserve for 10km and then instead of driving to the supermarket, we took Xav in the buggy. Although he kept grabbing his favourites out the bags and wanting to open them. We also had a party for Zoe at Inflatable World in Geelong. She had the best time with 16 of her friends.

Day 7

Sunday 8th Oct
To finish the day, Xavier and I walked 2km to the park to shoot some hoops. Xav loves basketball and although he tries, he cant quite make the distance…

Day 7

Sunday 8th Oct
When Elijah and I got back from our ride, we all walked the 2km round trip to get Tash a coffee. We got a new beach buggy this week that has a seat for Xavier, so we took that for a test drive.

Day 7

Saturday 7th Oct
After a couple of days of crappy weather, I was able to get out for a ride and a couple of walks today. Firstly, Elijah and I went for a 12km loop of the OG nature reserve. We have been doing this at least once every weekend the past month.

Day 5

Thursday 5th Oct
It’s been raining a fair bit here the past few days, so i went to the pool and swam some laps. 

Day 4

Wednesday 4th Oct
No kms today because Zoe turned 7. Her dinner request was Buckleys, because of the monkey bars.

Day 3

Tuesday 3rd Oct
Late night 2km walk in the rain to get a special breakfast for Zoe’s birthday in the morning.

Xavier in the trike

Monday 2nd Oct

Day 2

Monday 2nd Oct
Xavier and I went for a 4km ride around our estate. We purchased a trike earlier this year and he loves riding in it. 

Day 1

Sunday 1st Oct
Kicked off this years Walk for Epilepsy today with a 12km ride with my eldest around a nature reserve near our house. Then took Xavier out in the trike for another 3km. In the afternoon we all walked along Point Lonsdale beach to the park and back for about 3km. 

Thank you to my Sponsors

$500

Anonymous

$420

Torquay Larder

❤️

$211

Bowie Excavations

$211

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$211

Anthony Doyle

$211

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$211

Karen And Ray Hislop

Fantastic effort…sending much love to your family xx

$140

Grant W

Amazing work, Jas!

$140

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$105.50

Anth Chelle Jensen

Good work Jase xo

$105.50

Tournier Fam

Go Jase and team Carlin!

$105.50

Willis Setouts & Surveys

Great stuff Jason 👏

$105.50

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$105.50

Anna Grigg & Paddy Herrick

Go Jase!!!

$105.50

Evan

Your a legend mate. Well done.

$105.50

Jessica Marsland

You guys are amazing. Such a beautiful family

$105.50

Lachlan Carlyle

Good luck with it mate

$105.50

Redgum Country

Great work Jason and family ..

$105.50

Eilis Lenaghan

Go Jase!!

$105.50

Brad Kelly

$105.50

Fraser Caddy

Hey Xav. Looking forward to hanging out with you next Friday

$105.50

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$105.50

Simon Taylor

All the best Jas.

$105.50

Oliverbirch

XXX

$105.50

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$105.50

Mike Kelly

Great job Jase 👏

$105.50

Debbie & Mike Kelly

Keep up your inspiring efforts to raise awareness Jase! Nanny & Poppy 🩷

$105.50

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$105.50

Steve Rockliff

Good job Jase 👏

$100

Fozz And Jayne

Let us know when we can join you!

$100

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$100

Tyson Priddle

You guys rock.

$100

Paul Moorfoot

$100

Leonie Mahar

$55.55

John Todt

Great stuff, mate.

$52.75

Cindy & Gary Dawson

$52.75

Ben Harding

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Hubba

Amazing work mate!

$52.75

Trictia

Well done Jason on finding the time to fundraise and create awareness.

$52.75

Jason Carlin

Kicking off my 2023 Walk for Epilepsy with a self donation.

$52.75

Jensen Family

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Ante Skoko

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Janet Novak

$52.75

Stacey Hanson Richard Knox

Doing great Jase!

$52.75

Marcus Mcwilliam

$52.75

The Barritts

Nice work Jase. Love you brother.

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Michael Carrato

I thought you looked healthier!

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Diane Daw

$52.75

Nexus Excavations

Good work mate 👍👍

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Teresa Wiggers

$52.75

Andrew & Angela

$52.75

Sharon Allison

Super proud of you all. We know the grief and isolation you can feel as a parent of Special Needs. You are true warriors for Xavier. All our love Xx

$52.75

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$52.75

Peter Munro

$52.75

Phyllis Kelly

We’ll done Jase and Xavy Great Nan Philly 🩷

$52.75

Kura And Damian

Go Jason and Elijah👏👏

$52.75

Michael And Julie In Devonport

$52.75

Kerry Carlin

Well done Jason. Very proud of your achievement for Xavier ❤️

$52.75

Carmel & Frank Rice

Great work

$50

Anita Mullick

$50

Bron And Pete Conlon

$50

Cameron Finn

$42.20

Amanda And Shane Barry

You are a legend Jase, so proud of you! Do it for xav!

$31.65

Amy Wilkinson

Love the updates Jason. Such a great cause.

$26.38

Doyle Family

$26.38

Katie

Top work Jase 👏👏

$26.38

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$26.38

Katherine Whitehead

$26.38

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$26.38

Annie Goodwin

Good luck with your fundraising! Xavier is a lucky little boy to have such a beautiful family xx

$26.38

Marg Guthrie

Great effort Jason. Love what you do x

$25

Anonymous

$25

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$25

Libby Moorfoot

$20

David Case

Fantastic work Jase

$20

Anonymous

$20

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$20

Ray Purcell

Well done you. I admire those that “do”

$11.11

John Todt

a little extra to help keep the ball rolling. great work, mate.

$11.11

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$10.55

Kingo

$10.55

Nexon Asia Pacific

Your donation was proudly matched by Nexon Asia Pacific.

$10.55

Christine Hanan

Well done Jason.