Sarah inspires global audience in local documentary
KINGAROY resident Sarah Butcher is a familiar face to local flower lovers who frequent Linard Floral and Bridal Centre in Kingaroy. But as the subject of a local filmmakers short documentary, Sarah’s story of perseverance in adversity is now gaining global traction.
Sarah was born with 18Q syndrome, a rare chromosomal disorder in which there is deletion of part of chromosome 18. Having 18Q syndrome leads to different symptoms in different people, and in Sarah’s case, her disability is primarily physical.
But despite having overcome more obstacles and heartaches in her 27 years than many will in a lifetime, Sarah’s happy-go-lucky attitude and wicked sense of humour is nothing short of contagious.
Local filmmaker Tina Torrens, founder of Torkit Business Solutions, met Sarah through her husband Michael, who works as a farmer in Kingaroy. Having delivered his proteas to the store for many years, he and Sarah grew to know each other well and developed a close bond. When Tina first came across the Focus on Ability Film Festival, it was Michael who suggested Sarah be the subject of her film.
“Back in May, I was walking and I heard on the radio about this Focus on Ability film festival. Somehow it just stuck in my brain,” Tina said.
“It‘s about focusing on the abilities of people who have a disability and it needs to be from a positive light.”
“My original thought was to learn about Sarah, learn about her disability, and feature that. However, when you meet the family and sit down and talk to them more, there is such a beautiful story in there. So the film took a different turn.”
“My first thing was about showcasing what she and her family have done, accomplished, and can do. And I guess the by-product of that is the awareness around 18Q.
While Tina cherished the time she has spent with Sarah and the friendship that has since bloomed, she found it difficult and quite distressing to try and encapsulate all that Sarah is and all that she has been through in only five minutes.
“I was worried that I wouldn‘t portray her and her family in the light they deserved. And I just second guessed my skills, I second guessed me, I got Michael down several times. I don’t know love. What do you think? Do you like it or do you not?”
“And then trying to get it into that five minutes. When I left so much out, I thought will people get the story? It was very emotional for me.”
For Sharon and Ken Butcher, the experience of raising their first child, which is already a terrifying experience for first time parents, was made more difficult with so many additional unknowns.
“Initially, we were told that Sarah has cerebral palsy, but then when she had a failure to walk, and saw orthopaedic surgeons, then they started looking at what was going on. And then it was a journey to map out what was happening and how to fix it,” Sharon said.
When Sarah was born she had a failure to thrive due to severe reflux making it near impossible for her to keep food in her stomach.
“We had to actually put a nasal gastric tube down into her stomach to feed her at night to try and get as many nutrients in as we could,” she said.
In order to do this, Sharon and Ken had to thread the tube through Sarah’s nose and into her stomach, made more difficult by the ever-present danger of the tube following the wrong track into the baby’s lungs.
Despite the obstacles she has faced, Sharon said she is thankful for Sarah sheer determination and willingness to push her body further than medical professionals believed she could go.
“We were told that Sarah would never walk. But we were really lucky with Sarah. If you told her we‘ve got to do 15 minutes of exercises twice a day - and this is when she was a toddler - she would do those exercises and she would do them happily without complaining,” Sharon said.
And this determination has followed her throughout her life and enabled her to pursue a career that her disability, in theory, should have made impossible.
Having always loved flowers, Sarah did work experience in the shop with Linard’s then-owner Kathy Sanderson. When Kathy was forced to sell the shop after her husband became unwell, Sharon and Ken took up the reins to give Sarah the opportunity to pursue her dream.
“As a kid I‘ve always been interested in like plants and flowers. So, I suppose it was just a natural decision,” Sarah said.
Both Sharon and Sarah completed a certificate in floristry and had trainers come to the shop to show them the ropes.
Sarah said people who do not understand her disorder will sometimes treat her poorly because of it. Due to her lifelong hip issues, Sarah said she sometime gets harassed while crossing the road.
“It‘s happened numerous times. Where I’ll get halfway across the road and people will beep at me,” she said.
After the film was released, Sarah had several people from around Queensland and overseas reach out to her, including a family in Nanango. Through the film she’s had the opportunity to connect with others who can relate to her experience from a truly personal level, which due to the rarity of 18Q, has been difficult until now.
“Until now I‘ve only ever met one other person who has 18Q in my life. It’s really rare,” Sarah said.
Sharon also expressed gratitude to the Kingaroy community, who have shown their support for the family.
“We appreciate the community. Sarah is blessed that she feels part of the community and we‘re very grateful,” she said.
“Living with 18Q Syndrome” is a finalist in the Focus On Ability Short Film Awards 2020, which has entries from 19 countries.
You can vote for Tina and Sarah’s film HERE. Voting closes September 21.