It was a bond like no other by: Faith Valencia
This uniquely touching tale of sisterly bond is a celebration of the NDIS, and just one example of how it is changing the lives of thousands.
By GEORGIA BISHOP
“You may be as different as the sun and the moon, but the same blood flows through your hearts. You need her, as she needs you.” –George R.R. Martin.
Sisters Zia, and Zara, Maley, 20 and 19, have a bond that any siblings would be envious of.
Born on Queensland’s Gold Coast, and raised by a surf instructor father, the girls were surfing before they could even walk. Growing up, physical activity and a connection to nature became an imperative part of daily life in the Maley household, whether it was bike riding, paddle boarding, surfing, swimming or walking the girls have done it all.
“We were such water babies”, said Zia with a laugh.
As is always the case, despite their identical upbringing, the sisters couldn’t be any more different.
One wants to travel the world, the other is right at home on the stunning Gold Coast. One loves children, the other animals, and one has cerebral palsy, the other- her full-time carer.
Born at Gold Coast Hospital in May 1998, Zara sparked concerns amongst her doctors due to her abnormally small features and slow development rate. At just 18 months old, following extensive testing and analyses by doctors, Zara underwent an MRI scan that concluded she had a cerebellum that was one third the normal size; determining a final diagnoses. Zara had cerebral palsy.
Professor Jozef Gecz from Australia’s Robinson Institute describes cerebral palsy as covering a wide range of brain injuries.
“Cerebral palsy is associated with a diverse and large group of either inherited or spontaneous genetic mutations, that may sometimes interact with environmental triggers during pregnancy,” Dr Gecz said.
”This aberrant genetic diversity is also seen in autism and intellectual disability.”
In Australia alone, there are more than 34,000 people living with Cerebral Palsy, and more than 17 million worldwide.
Cerebral Palsy, or CP, is an incurable impairment, that affects a person’s ability to move and think, and is the most common physical disability in children.
In Zara’s case, although it primarily affects her speech, motor skills, comprehension and self-care functions, she is otherwise physically extremely able.
“She particularly struggles with fine motor skills, for example doing up zippers, brushing her hair and teeth, doing shoe laces, and using knives,” Zia said lightly.
“Although she is perfectly capable of walking, running, riding her bike and swimming.”
Growing up, Zara received 24/7 care from her family, father Chris and sister Zia, and during holidays her mother Alice Lui.
At the turn of last century, when the sisters were still young, Chris separated from the girls mother, Alice who moved back up north to Badu, an island in the Torres Straight.
Over the next 18 years, the girls, based on the coast, would trek up North to Badu every holiday to spend time with their mother.
It was during these countless hours spent travelling and in transit alone with Zara over the years, that Zia matured to become a naturally maternal caring figure to her younger sister.
“If we ever went anywhere, I’d pack her bag, or I’d be doing her hair and getting her ready each morning,” Zia said. “It wasn’t something Mum or Dad would have to ask, it was just the norm doing those little things like that.”
For 16 years, the Maley family, particularly father Chris, managed as Zara’s full time carer’s with little government support, whilst she attended the Southport Special School five days a week.
But, when it came time for Zara to graduate from the high school in 2015, the family needed to make other arrangements.
“Before I became her sole carer the responsibility was left to my parents and myself as we were totally unaware of the support available to us from the government,” Zia said. “My parents and step parents have full and part time jobs to support their large families, and weren’t able to provide full time care on top of that.”
Facing a tragic reality of Zara potentially having to leave the family home at just 16, to receive the 24/7 care she deserved and required, the family desperately searched for other options.
“Sally, my step-mum did some intense research and found we were eligible for a government young carers allowance to help with the Zara’s and my own living expenses, only I was the only one that fit the requirements,” Zia said.
And so, just like that, Zia became Zara’s official full time carer, at just 18 years old- an age where most teenagers barely even care for themselves.
Now two years on, with the financial support of the young carers government grant and physical support of organisations like BlueCare, Gold Coast Recreation and Sports Incorporation, and Multicap Respite care, (all of which will fall under the NDIS when its rolled out) Zia delicately juggles her responsibilities as a carer with her full time primary teaching university degree- but she wouldn’t have it any other way.
“I’m grateful that our government assistance helps me cover my costs of living, like rent, fuel and food, as it’s meant that I haven’t needed to find another job, which would mean I would leave Zara without a carer,” Zia said.
“It also covers Zara’s respite care, which she receives three to four times a year and is when she goes to a shared home with other people who have disability.
“There are carers who look after Zara for four nights and do activities as a group, which allows me to have a weekend to off from time to time, to relax and get work done.”
As for a glimpse into the life of a full time carer, an average day for Zia and Zara looks a little like the following.
“My daily routine on any given day with Zara includes me waking her up, selecting her clothes and making sure they are put on correctly, making her breakfast, ensuring she takes all her medication, brushing her teeth then her hair, and then putting on her shoes,” said Zia.
Zara then attends her activities for the day.
Some days are spent with her sister Zia, and others, in particularly every Friday, are spent with a worker from either BlueCare or Gold Coast Recreation and Sports Incorporation, who collects Zara and takes her out, giving Zia the opportunity to get some work done.
“Then at night, Zara will help me make her lunch for the next day, then she is showered, hair and teeth brushed and put into her pj’s for bed, said Zia.
“Finally, she takes her nightly medication and then its lights out.”
Although a rare and poignant tale of a unique sisterly bond, Zia and Zara’s story is just one of many in how the NDIS and its subsequent and preceding schemes are changing the lives of people with disabilities and their families.
“If we didn’t have the help we had, Zara’s and my own life would look very different,” Zia said.
“I think it’s important people see stories like ours to kind of see just how much it has helped us, and especially how its helped Zara.
“Some days, its a real challenge, but I mean- she’s my best friend, so to see her living a wonderful, happy life where she is given so many opportunities to experience different things… that’s really something special to me.”