Up until three weeks ago, 12-year-old Highett youngster Emily Lever was the only person in the world diagnosed with an incredibly rare and life-threatening form of epilepsy and Acute Lymphoblastic Leukemia.
That was until her mum Lauren found out about a child in the US.
Emily’s medical history is lengthy and complex, starting when she was just 5.5 months old, when she suffered her first seizure.
For Lauren, it was a terrifying moment she’d never forget.
“Over the next weeks and months the seizures increased, the longest at that point was sitting at 90 minutes,” she said.
“At the time we were in the process of moving to Australia.
“We were asking the doctors, do we hold off, do we stay?”
One neurologist wanted to run a test to determine if her epilepsy was childhood epilepsy.
The Levers were told it would take three months for the results to come back. She was being tested for Dravet Syndrome.
“We carried on as per normal, and got to Australia, 3 months later we ended up getting an email from the doctor saying you need to seek medical attention immediately,” Lauren explained.
With the help of their local Bayside GP, who spent hours on the phone researching who the best person was to take on Emily’s case, the Lever’s were referred to an acclaimed paediatric neurologist, Professor Ingrid Scheffer, who is the world authority on Dravet Syndrome.
Incredibly, the neurologist who had first flagged the possibility of Emily having Dravet Syndrome had been in Europe for a conference hosted by Professor Scheffer.
It was a turn of events that’s truly incredible, and the diagnosis, while devastating, has given the Levers and Emily’s doctors a much better grasp on her condition.
Just days before Christmas in 2018, the family were dealt another cruel blow.
Emily had woken up one morning screaming out in pain.
The day before, Lauren recalled, she’d had a fabulous day at Luna Park for a charity Christmas party and was in amazing spirits.
The next morning, aged 11, Emily was diagnosed with cancer.
Since her diagnosis, she’s spent extended periods of time in hospital.
And there’s a number of superheroes who get around the halls of the hospital, who have made Emily’s hospital experience bearable, even positive, in the darkest of days.
“With the Starlight Foundation, we have been very privileged to have so much contact with Starlight over the years,” she said.
At one point, Emily was so unwell she spent over 120 days in hospital.
A time that Lauren says was a blur.
“The Starlight captains became her world,” she said.
“They were her best friends.
“They bring this positive energy, this fun, they bring joy every day.”
There were days no visitors were allowed in, but the Starlight captains would “goof around” and make Emily laugh from outside her door.
They had quizzes, prizes, games – fun things to do to distract the courageous children like Emily who spend their days in hospital wards.
“It was a constant stream of support,” Lauren said.
Despite the intrusive, painful procedures, feeling rotten and isolated, the Starlight captains were always successful in bringing a “ray of sunshine” for Emily.
“To be able to see your child go from being really, really sick to having a moment of happiness of fun and laughter, these little pockets of beautiful memories in what was a blur in the first 6 months of Emily being diagnosed.
To read more of Emily’s story, visit https://starlight.org.au/what-we-do/our-stories/kids-teens/emily-story
To donate to support the incredible work of the foundation, visit https://starlight.org.au/