A young Cranbourne East woman is hoping to end the stigma around Tourette Syndrome as she waits for life-changing surgery.
Nineteen-year-old Emma Brown was diagnosed with rapid onset Tourette Syndrome at the age of 15.
Her four-year journey with the debilitating condition has led to the family looking into deep brain stimulation in the hope to reduce Emma’s motor and vocal tics.
Emma said she hopes the surgery will allow her to live the life she has always dreamed of.
“I’ve always wanted to drive, work full time, do regular adult stuff others take for granted,” Emma said.
“This surgery means I get to live my life to my full potential.
“It is life-changing for me because I will no longer be as anchored down to a condition I never chose to have. I won’t have to suffer as much anymore.”
Pakenham Racing Club has rallied behind Emma, hosting a fundraising night on Friday 14 October to help the family raise funds for the surgery.
Surgery is expected to cost somewhere between $20,000 and $40,000.
Emma’s mum Amanda said as soon as the family realised they needed to raise money to help assist, she approached her boss Jules Cottee at the Pakenham Racing Club.
“The support from our family, friends and the Pakenham Racing Club has been incredible,” Amanda said.
“They’ve been so supportive and our leadership team, committee and members who get to enjoy the beautiful venue for free even purchased tickets to come along and support us – it doesn’t get any better than that.
“We often to say to each other we don’t know we got so lucky to have all these incredible people in our lives that want to help us.”
On the night, $12,827 was raised and a GoFundMe has raised $2500, along with donations from family and friends who couldn’t attend of $9500.
Amanda said it’s been a hard journey to watch her daughter go through.
“It’s been a massive rollercoaster ride, we’ve had highs and lows along the way,” she said.
“The highs – watching Emma tackle this head-on with such grace and determination, finding our tribe (meeting other families with Tourette Syndrome) and the Tourette Syndrome Camp.
“The lows – watching her tic uncontrollably for hours, having to physically hold her down to stop her hurting herself, seeing the impact it had on her ability to learn to drive, dropping out of school and not being able to eat food properly.
“We live by the motto that this is something she’ll die with, not because of, and that makes it a lot easier to cope with.”
Emma said she sometimes still can’t believe she has Tourette’s but is grateful for the support she has received since her diagnosis.
“It was insane really, I never thought in a million years I would have Tourette’s,” she said.
“To this day I’m still shocked I have Tourette’s.
“The journey has been heartbreaking but full of love is the best way to put it.
“I have had so much support that not once have I ever felt alone in my journey. Tourette’s may be awful and debilitating but I have my loved ones by my side.”
Emma wants people to educate themselves about Tourette’s.
“We don’t tic all the time – some days are good, bad and really bad,” she said.
“We are not for your entertainment and please don’t view our Tourette’s as all we are.”
Head to gofundme.com/f/emmas-brain-surgery-journey to donate.
