Twenty-year-old Logan local Jaden Dennis-Marler was born with a life-threatening genetic condition, but despite the challenges he faces every day, he’s now living his “best life”.
Mr Dennis-Marler, supported by his parents Tanya Dennis and David Marler, is a National Insurance Disability Scheme (NDIS) participant.
“When Jaden was born in 2002, we didn’t know he had a disability,” Ms Dennis said.
It was only at three-months-old, she said, that Mr Dennis-Marler was diagnosed with a rare genetic disorder called 1p36 Deletion Syndrome.
“Throughout the early years, Jaden was very sick,” Ms Dennis said.
He was rushed to hospital when he was three-weeks old due to a choking incident, she said, and placed in an induced coma.
“He would go blue, and his larynx would not work due to his seizures.
“This would happen up to 8 times a day, but he was a fighter, and I never gave up on him.”
Apart from the seizures, which are controlled through medication, Mr Dennis-Marler cannot walk or talk, he has scoliosis and a serious heart condition.
He is also hearing and vision impaired.
He lives with his parents in a purpose-built house, with access to a range of NDIS supports.
These include a customised wheelchair, vehicle modifications, an all-terrain buggy, five support workers, consumables such as continence aids, physiotherapy, music and art therapy, and domestic help.
Ms Dennis said before her son received NDIS support, the pair “did everything” for him.
“The best thing that’s happened since Jaden became an NDIS participant is that David and I can now close our eyes and go to sleep,” Ms Dennis said.
“Jaden needed monitoring around the clock because of the risk of seizures and choking.
“We both had to put our careers on hold and we had to beg for donations because Jaden’s medical equipment was expensive.
“It was hard, but our main objective was keeping our child alive.”
Not only is Mr Dennis Marler alive – but he’s also an author and events manager.
He co-created MyCoolEVENTS in 2021, a company that organises social outings, such as concerts and discos, for NDIS participants.
Up to 60 people attend his events, Ms Dennis said.
“People like Jaden can’t go to a nightclub,” she said.
“So, we brought the nightclub to him.”
Mr Dennis Marler also co-wrote a book series called The Adventures of Benki Boo.
Now in its fourth series, The Adventures of Benki Boo is co-written by Ms Dennis and their online mentor Vito Scandurra.
“It tells a story about an alien that morphs into a dog to experience life on Earth,” Ms Dennis said.
“Benki Boo finds this human who can’t walk or talk but they communicate telepathically.
“I write the content, Jaden and his dog star in the stories and Vito is the technical genius.”
Ms Dennis said her family “lives in the now” and doesn’t look to the future.
“… because it’s important to love and to shine,” she said.
“Our love for Jaden is so enormous and he continues to thrive thanks to the NDIS and his family.
“Jaden deserves the best in life.”
