In late 2018, I was out for dinner with my son Roarke and daughter Lila.We were having a grand chat when, mid-sentence, Lila froze, with her arms in the air. Her eyes rolled back in her head, and then she toppled off the side of the chair. Out of nowhere... I thought she had passed away.
Then, she started convulsing uncontrollably on the ground. For what seemed like forever. Then, she was out. Completely limp. Unresponsive. It was the worst moment of my life. The restaurant called an ambulance and I panicked and tried to get her to wake up. But she wouldn't respond.
I thought maybe she was choking. But her jaw was clenched shut. I prised her mouth open, and blood trickled out. But at least she was breathing.
Eventually, the ambulance arrived. It was horrific. She had another seizure by the side of the restaurant. Then another in the ambulance on the way to the hospital.
We discovered later that she was having tonic-clonic seizures. But they sent us home without any answers. Apparently, some people just have a seizure out of the blue and never have another one.
Then, she had three more of these tonic-clonic seizures a few weeks later at school. Then, some more another few weeks after that. She also developed this sigh/hiccup that she would do forty or fifty times a day whilst staring off into the distance for a short period of time. These are called absence seizures.
Lila was diagnosed with epilepsy, and it has completely changed our lives.
More info: milliondollarteddybear.com
My daughter Lila was diagnosed with epilepsy—she's one of 250,000 Australians with epilepsy
Here's Lila undergoing an EEG to test her epilepsy.
She is a fearless little girl, but we have to pull her back from climbing trees, swimming, or water skiing, in case she has a seizure in a dangerous place.
More than 250,000 Australians have epilepsy, which is pretty staggering. Let alone the millions more family and friends who are affected by it.
When I found out that Epilepsy Action Australia had a funding shortfall because of the effect of COVID, I had to do something. And that something is the Million Dollar Teddy Bear
(Lila and me with Baby Bear―the inspiration for the Million Dollar Teddy Bear)
So, when I found out that the wonderful people at Epilepsy Action Australia had a funding shortfall because of the effect of COVID, I had to do something. And that something is the Million Dollar Teddy Bear.
Yep, we are hoping to sell one teddy to an amazing philanthropist with a heart of gold for $1,000,000.
Why a teddy bear?
Well, one of the many wonderful things Epilepsy Action Australia does is to send young kids with epilepsy their own Cuddly Ted-E-Bear (the E stands for epilepsy), which helps them feel the love and support they can get in a very tangible way. Lila has one (she calls him Baby Bear) and he is a cherished possession.
Here's the Million Dollar Teddy Bear himself. We have dubbed him Maximillion
His clothes have been designed (and handmade) by Australia's 2019 National Designer of the Year, Christian Kimber (whose brother has epilepsy).
With this million dollars, Epilepsy Action Australia will be able to provide:
- support for people with epilepsy of all ages, from very young children to their families;
- seven-days-a-week phone support, with a trained nurse at the end of the line;
- epilepsy education for the broader community;
- campaigning for new treatments;
- and raising awareness of epilepsy and its impacts.
- support for people with epilepsy of all ages, from very young children to their families;
- seven-days-a-week phone support, with a trained nurse at the end of the line;
- epilepsy education for the broader community;
- campaigning for new treatments;
- and raising awareness of epilepsy and its impacts.
Lila even dyed her hair purple for Purple Day―the annual Epilepsy Awareness Day
Teddy is out and about spreading the word. Here he is chilling with Tommy Little
Lachy the Purple Wiggle is supporting the Million Dollar Teddy Bear. His brother has epilepsy
Teddy getting his fashion on with the Christian Kimber team
Teddy going for a walk with Jessica Rowe
Teddy relaxing with Melissa Doyle
Teddy's private lesson with former Socceroo captain Paul Wade
Teddy chatting with Peter Fitzsimons
Teddy hanging out with Russel Howcroft
Teddy with acting legend Nadine Garner
The Million Dollar Teddy Bear hard at work editing the launch video
We made a launch video narrated by the incredible actor Nadine Garner and shot at the incredible Rippon Lea Historic Mansion
Go to our website to learn more and spread the word!
If anyone happens to know any squillionaires, send them there! It would mean the world to my daughter Lila. And to the millions more who are affected by this mysterious neurological disorder.
If you don't have a million dollars, every little bit can help, find out how you can donate here.