When Sophie Schilg was nine-months-old she had a seizure that changed everything. A series of tests revealed a rare medical condition.
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Georgie Schilg discovered Sophie's condition caused non-cancerous growths to form in the brain and other parts of the body.
"We were told she had tuberous sclerosis, which is a condition that we'd never heard of and most people had never heard of," Mrs Schilg said.
"It affects most organs of the body, but one of the biggest manifestations of it, especially in kids, is that they have seizures.
"When they're diagnosed at nine-months-old you have lots of questions. Are they going to be able to walk? Are they going to be able to talk? Will they attend mainstream school?"
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While those questions were eventually answered, many often remain unanswered and the Schilg family have become experts in dealing with uncertainty.
"You have your ups and your downs," Mrs Schilg recalled.
"At times the epilepsy is well controlled with medications and things go well.
"But then at times, things aren't so good and you can try finding triggers and thinking of reasons why and journaling events.
"You just have to be patient, which is hard when you're watching your little one suffer but that's the way it is."
To mark the start of Epilepsy Awareness Month in Tasmania and increase the community's understanding of the condition, Mrs Schilg has opened up about some of her family's experiences.
"When people think of seizure, they think of a fit or turn, they all have their different names for it," she said.
"The typical thing is that the person is unconscious, drops to the ground and moves their arms and legs, but there's so many different types of seizures.
"Someone might still be looking at you and having a seizure. It takes on many forms. They mightn't be being rude or ignoring you, they might be actually having a seizure."
As well as helping people learn how epilepsy affects people like Sophie, Mrs Schilg wants to shine a spotlight on how the ongoing shortage of allied health professionals in Tasmania can prevent family's from getting important support for their loved ones.
"I find that access to health care in Tasmania is very poor," she said.
"There's a visiting neurologist at best and most of the GPs don't have a good understanding of the drugs [that Sophie could use] and there's always new drugs coming out, but if they don't have a great knowledge of it they aren't willing to prescribe it."
The Schilg family often travel to the Royal Children's Hospital in Melbourne to access specialist care they can't get in Tasmania.
The statistics show that epilepsy is common in our community. It could affect any one of your family or friends.
- Georgie Schilg.
While many people with epilepsy were denied access to Australia's National Disability Insurance Scheme, Mrs Schilg said Sophie was eligible because of the tuberous sclerosis diagnosis.
The family are grateful for the NDIS funding, but stubbornly long waiting lists and a shortage of speech, physio and occupational therapists in Tasmania makes getting consistent support a regular challenge.
Like many families who include a child, sibling or loved one with disability - Ms Schilg said dealing with the support system and emotionally draining medical setbacks can lead to feeling overwhelmed.
"You get through it with good friends and family. You have your down days but you know you've just got to get on with it.
"We have our challenges everyday but Sophie's pretty happy and bubbly.
"When it comes to all of our specialist appointments and all the different therapist and enduring appointments and 10 days of video electroencephalography (EEG) monitoring literally shut in a hospital room - she's amazing and she could teach so many adults so much."
Now aged 11, Sophie is approaching the end of primary school and Mrs Schilg says she sees and hopes for a bright future.
"We hope that Sophie will live independently.
"She'd love to have some kind of employment and I can see her in some kind of role where she's working with people and helping people.
"There are lots of days, particularly after hospital visit, that she says she wants to be a nurse or doctor."
A career in the beauty industry is also not out of the question.
"When we got to the hairdresser she loves helping," Mrs Schilg said.
"She'll go and watch them washing people's hair, she loves to help sweep the floor and tidy up."
If people took one action in response to Epilepsy Awareness Month, Mrs Schilg said she wanted it to be a practical one.
"Learn how to look after someone if you think they're having a seizure, keep them safe."
