Ivan Tesic’s heartbreak after toddler daughter’s death months after his prison release

The three-year-old daughter of convicted Gold Coast drug kingpin Ivan Tesic has tragically died a little more than a year after he was released from prison.

Ivan Tesic’s daughter has tragically died this week.

• The life and times of Ivan Tesic

The three-year-old daughter of a convicted Gold Coast nightclub drug kingpin has lost her battle with a rare disease.

Storm Tesic died in the arms of her devastated parents, Ivan Tesic and Katie Wighton Sunday after succumbing to Sandhoff disease, a rare inherited genetic condition.

In a post to her Facebook page, Ms Wighton wrote their “baby, our precious Stormi” had passed away pain free.

“Snuggling mummy and daddy, our little girl was ready for her big sleep. As she drifted off, she was calm and comfortable, free of pain,” she wrote.

“The pain is insufferable, our hearts ache for our baby.

“Baby sister to (three brothers, including her twin brother).

“When it storms, please close your eyes and think of our girl.”

Katie Wighton with her daughter, Storm Tesic who was only three years old when she passed away from the rare Sandhoff disease on Sunday. Picture: Facebook

Miss Wighton told the Courier Mail Storm, nicknamed Stormi, was very bubbly little girl who loved unicorns and who was always laughing.

“Stormi had this cute sweet little laugh, I can’t explain it, a gaggle like a cackle type of laugh,” she said.

The heartbroken mum said Storm developed normally from the time she and her twin brother were born in January 2020, even hitting some milestones just ahead of her brother, including eating solids, rolling over and holding toys.

Storm Tesic, pictured about 14 months old, was only three when she passed away from the rare Sandhoff disease on Sunday. Picture: Supplied

She was also originally very vocal and loved to laugh and speak in her baby babble.

But by about nine months old Miss Wighton noticed her only daughter had started to lose some of her neck strength so took her to a pediatrician for a check-up.

Several tests followed, including genetic ones that had to be sent to the US, with the results indicating a rare, fatal disease coming back just after the twins turned one.

Sandhoff disease progressively destroys nerve cells in the brain and spinal cord and causes problems in muscles, organs and development, resulting in early childhood death, according to multiple medical sources.

It is a severe form of the neurological disorder Tay-Sachs disease, according to the national Institute of Neurological Disorders and Stroke.

Drug kingpin Ivan Tesic outside the Brisbane Supreme Court in 2019. Picture: AAP/John Gass

Onset usually occurs by about six months of age with most affected children passing away by about three years old.

Learning of the diagnosis and what it meant was “probably the most difficult day, besides this week, of my life,” Miss Wighton said on Tuesday.

She also described it as having her “heart ripped from my body” in a post she wrote for the Rare Find Foundation’s Facebook page in February 2022 for Rare Disease Day.

“Extensive tests, and an unbearable time waiting for results, we were told of her diagnosis just one week after her first birthday. It felt like having my heart ripped from my body. It still does, every day,” she wrote in the post.

Storm Tesic, then about two, in a photo posted in February 2022. Picture: Rare Disease Foundation/Facebook

By the time the twins were two, Miss Wighton said Storm had regressed so much she no longer had controlled use of her arms, legs or her head and needed oxygen assistance.

The toddler had also lost a lot of her hearing and eyesight, needed to be fed via a stomach feeding tube by then and had started having seizures.

“It feels like every week she is robbed of her ability to do something she once could, of milestones, of the things she so deserves to be able to do, like any other child her age. I see her struggle every single day,” Miss Wighton wrote in the 2022 post.

Mr Tesic, 50, declined to be interviewed this week.

He was released from a Queensland prison in May 2022 after serving the required half of an eight year, nine month sentence for drug possession and is serving out the remainder of his parole in Sydney.

Ivan Tesic has been enjoying his freedom since his release from prison. Picture: Supplied

The former Gold Coast nightclub owner was convicted in February 2019 for possession of 3.68kg of pure methamphetamine with a street value of up to $5.25 million after six soft drink bottles filled with methamphetamine oil were found in a car outside his Gold Coast mansion in 2014.

Miss Wighton, aged mid-30s, also declined to answer most questions about her fiance, except to sing his praises as a father.

“As a dad he is amazing,” she said.

“If I’d had a big night with Stormi he would be up with her first thing, getting her organised.

“He has made her his whole priority. You wouldn’t think of it to look at him, but he’s an amazing, doting hands-on dad.”

Storm Tesic, pictured about seven months old before she started showing symptoms of a rare disease. The three-year-old passed away from the Sandhoff disease on Sunday. Picture: Supplied

Storm was also a big daddy’s girl, she said.

With no family history of the rare disease, neither Mr Tesic nor Miss Wighton knew they were both carriers of the gene that causes infantile Sandhoff disease.

The couple have four children, including Mr Tesic’s oldest son from a previous relationship, with Storm the only girl and the only one affected by the rare condition.

“If two people are carriers and you have a child, that child has a one in four chance they can either have the disease or be a carrier,” Miss Wighton said.

Storm would still vocalise or smile from time to time, especially when her mum sang or played her favourite song, ‘Twinkle, twinkle little star’.

“We’d get a sweet smile so those were really special days,” she said.

Storm also really loved the breeze.

“Every time we would go somewhere and it was really windy, she would close her eyes and smile,” Miss Wighton said.

Convicted drug kingpin Ivan Tesic is now on parole in New South Wales. Picture: John Gass/AAP

“So we would often take her to the beach and she would love the breeze in her face.”

Storm’s twin brother would also dote on his sister.

“It was very, very special,” she said.

“He would always come over and kiss her and bring her toys.”

September is International Tay-Sachs and Sandhoff awareness month.

According to the Rare Find Foundation, Sandhoff and Tay-Sachs diseases are lysosomal storage disorders, collectively referred to as the GM2 gangliosidoses.

A ganglioside, which the brain needs to function, is a special type of fat that is especially found in brain cells.

Rare Find Foundation chairwoman, Anna Pak Poy, who lost her 22-month-old son, Sebby Pak Poy Coupar, in March 2019 to Tay-Sachs disease, said the two diseases were related disorders that occur when the body’s cells are unable to process and clear waste products, with the most-affected cells being in the brain.

The progressive loss of function eventually leads to the early death of the child.

Learn more by visiting rarefindfoundation.org

Originally published as Ivan Tesic’s heartbreak after toddler daughter’s death months after his prison release