We’ve heard the old adage that a mother’s instinct is never wrong, but there was a time when Gold Coast mother Kate Elliott definitely wished she was.
She recalled how she sensed that all was not right with her baby daughter Jade Elliott when she was born 14 years ago.
“I kept going back to my paediatrician, but all they did was to assure me that I was just being paranoid.”
When Jade was four-and-a-half, her preschool teacher alerted Mrs Elliott to the possibility that Jade was not developing at a normal rate.
This time, full blood tests were ordered, with the crushing diagnosis coming three days later: Duchenne Muscular Dystrophy (DMD), a rapidly degenerating disorder that causes muscle weakness and loss of the muscle tissue.
It’s a condition that predominantly affects boys – doctors expect 1 in every 3,500 boys to be born with the condition.
People living with DMD are usually bound to a wheelchair by early teenage years, and are not expected to live beyond their 30s.
It was soon established that Jade is the only girl in Australia to be diagnosed with the disease, and 1 of only 30 in the world, with aid from 2008 Senior Queensland Australian of the Year finalist Helen Posselt, an internationally renowned physiotherapist and world expert on the disease.
A trained nurse, Mrs Elliott knew what was involved medically, but the load on her shoulders increased when Jade left heart-wrenching notes at the foot of her bed for her parents to read.
“It said things like ‘I hate my life, I wish I were dead’, that was very painful for us to have to read,” she said.
“It was a very dark and difficult period for us.”
The pivotal turning point came when Jade got involved with the Shark Bait Kids’ program devised by MontroseAccess physiotherapist Sue Nicklin two years ago, providing her with the once-in-a-lifetime opportunity to swim alongside sharks and stingrays in a safe and therapeutic environment.
Ms Nicklin, who developed the program – the world’s first – after a young client she was working with expressed a wish to swim alongside sharks one day, said that Shark Bait Kids provided the children with a lifeline, in more ways than one.
“DMD is a disease where a lack of exercise worsens the condition, but too much exercise unfortunately can do the same,” she said.
“Hydrotherapy is a perfect middle ground, and the program provides the kids with confidence, which can turn their lives around.”
Jade repaid Ms Nicklin’s belief when she stopped writing the notes and started to open up, made friends, and even set up an account on Facebook.
Mrs Elliott and Ms Nicklin have also developed what is set to be a lifelong bond between them.
“When Jade stopped walking, Sue was the first one I called and she was just so supportive, I couldn’t have got through it without her,” Mrs Elliott said.
A far cry from her former depressed self, Jade is now an active teenager in motorised wheelchair sports, and enjoys spending time with her miniature pony at home.
She was a vocal supporter of Brisbane Dive Academy’s Mick Wheatley, who helps run Shark Bait Kids, when he attempted to break a Guinness World Record at the Ekka this year for the longest time spent underwater with just one cylinder of oxygen.
Although his effort fell short by a mere 15 minutes, more than $1,000 was donated to charity and the event raised invaluable awareness for the disease.
Together with Mr Wheatley and Ms Nicklin, Jade is a true community inspiration, one that constantly achieves the impossible, and shows the strength of the human spirit.