My Activity Tracking
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kms
My target 100 kms
I’m taking part in Walk for Epilepsy because...
I want to raise money and make a difference for people living with epilepsy- people like our Romeo who lives with a complex, unknown genetic epilepsy.
Our lives were turned upside down when, at 7 Romeo experienced a catastrophic status seizure which had his father & I performing CPR at 4am on our bathroom floor. Romeo is now 13 and since that day has had countless 000 calls, he has been intubated, needed oxygen support, gone into status multiple times and ungone extensive testing. He has trialled 9 individual medications, mixes of medications, bridging medications and rescue medications. He now lives with an intellectual disability and yet, is the absolute light of our lives. Romeo is the eldest of five children, he loves dancing, the Minions and Bruno Mars.
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 and donating by clicking the “donate now” button.
Thank you in advance for your generosity, it means a lot!
My Achievements
Added a Profile Pic
Shared My Page
Sent an Email
Made a Self-Donation
Raised $250
Raised $500
Raised $1,000
Raised $1,500
Raised $2,000
Raised $2,500
50% Fundraising Target Reached
100% Fundraising Target Reached
50% Distance Taregt Reached
100% Distance Target Reached
Created a Team
1 in 25 Challenge Champ
Legends Challenge Champ
My Updates
another tc
Monday 12th Oct esterday at 4:30pm, Romeo had a tonic-clonic seizure in the cookie aisle at Coles.The SAME Coles where my waters broke in the frozen section. Honestly, we need a new supermarket. 😅
What followed was 2.5 HOURS of seizures.
Despite ambulance medication to stop it, Romeo went into focal status epilepticus and needed emergency treatment with a loading dose of Keppra. He then started having a new kind of seizure we haven't seen before.
Status epilepticus is when seizure activity lasts too long or seizures keep happening without recovery. It’s a medical emergency because prolonged seizures can cause serious complications, including brain injury.
PICU was called. We had to prepare for the possibility of anaesthetic medication, a breathing tube and a ventilator to suppress his brain’s seizure activity.
Thankfully, Romeo stabilised before we needed to take that next step.
But we’re still in hospital, trying to get his seizures under control. Again.
People hear that Romeo has epilepsy, but I don't think most realise what that can actually look like. His brain is already affected by developmental and epileptic encephalopathy, and we’re now working with his team to understand what yesterday means for him going forward.
I'm exhausted. We're all exhausted. And through all of it, you're still just a mum watching your boy go through something no child should have to.
A huge thank you to the Gympie doctor who happened to be shopping who assisted along with another woman who offered a hug and support. But the biggest shout out goes to the Duty Manager at Coles Caloundra who handled the situation so professionally and kept my other children entertained while their brother received life saving support.
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Thank you to my Sponsors
$106.75
Claire & Connor
$106.75
Mark Mccombes
$60
Matthew Samen-curtis
Sending you strength and support for your incredible family. Keep fighting and being there for them, I saw your strength, and I’m positive they do too. It was incredible to see how caring and knowledgeable you were with your son and I hope he can get the treatment he deserves soon. All the best, Matt
$55.95
Jen Cook
Best wishes. So much respect. Hugs to Romeo x
$50
Kristen Lee
You go girl 💪 🙌🏻 It’s a pleasure to support your fabulous goal ✨
$46.38
Sarah
For all the warriors!
$34.40
Heather Wolfenbarger
Sending all our love to you, sweet Romeo, and the whole ohana. 💕
$28.81
Sherie
I hope you reach your goal. All the very best.
$28.81
Nexon Asia Pacific, Ucb & Warwick Douglas Constructions
Nexon Asia Pacific, UCB and Warwick Douglas Constructions have matched this donation.
$23.81
Diane Kerr
$23.81
Durrelle Sklenars
All the best x
$11.92
Ashley
$11.92
Geraldine
Just a little to help
$10
03 8809 0644
walk@walkforepilepsy.org.au
