Ivan Tesic’s daughter tragically dies from a rare disease just months after he was released from prison
The young daughter of a convicted Gold Coast drug kingpin has tragically passed away after bravely battling a rare disease.
Storm Tesic, 3, the daughter of Ivan Tesic, 50, and Katie Wighton, died of Sandhoff’s disease on Sunday.
The death comes just months after Mr Tesic was released from a Queensland prison in May 2022.
He had served the mandatory half of his eight-year, nine-month prison sentence for drug possession and is completing the remainder of his Sydney parole.
It follows his conviction in February 2019 for possession of 3.68 kg of pure methamphetamine with a street value of up to $5.25 million.
His daughter Storm died of Sandhoff disease, a rare genetic disorder that shuts down the nervous system.
The three-year-old daughter of nightclub owner and drug kingpin Ivan Tesic (pictured), 50, has died
Storm Tesic (pictured), 3, tragically died of Sandhoff’s disease on Sunday. Her mother shared a heartfelt tribute on Monday
Symptoms include muscle weakness, blindness, deafness, breathing problems and seizures, according to the Medical Biochemistry Page.
Babies usually develop the rare disease by the time they are six months old. Most die from it before they turn four.
Mrs Wighton found out about her daughter’s condition after taking her to a pediatrician for a check-up when she realized she was losing her neck strength.
Storm’s condition rapidly deteriorated, with the child losing most of her sight and hearing and control over the use of her arms, legs and head.
She also needed oxygen, had epileptic seizures and had to be fed through a gastric tube.
A devastated Mrs Wighton confirmed her daughter passed away on Monday.
“Our baby, our precious Stormi,” she wrote.
Cuddling with mom and dad, our little girl was ready for her big sleep. When she drifted away she was calm and comfortable, free from pain.’
“The pain is unbearable. Our hearts ache for our baby.”
“When it storms, please close your eyes and think of our girl.”
Storm had three brothers, one of whom was a twin.
Ms Wighton’s friends shared their condolences on social media.
Our deepest condolences. I hope everyone finds peace in this difficult time! Our thoughts are with you all,” said one.
Another wrote: “I’m sorry for your loss. Sending you all so much love and strength.”
Both Mr. Tesic and Mr. Wighton have no relatives who had Sandoff’s disease, but are carriers of the gene that causes the disease.
Mrs Wighton recalled to the Courier Mail that her daughter had “a cute, sweet smile, I can’t explain it, a giggly smile.”
She said Mr. Tesic was a great father to Storm.
“He made her his priority. You wouldn’t think it when you look at him, but he’s a wonderful, loving, hands-on father,” she said.
The couple have four children, with Mr. Tesic having an eldest son from a previous relationship.
Mr Tesic was convicted of possession of drug ice cream worth more than $5 million and sentenced to nearly nine years in prison in February 2019 (Photo: Mr Tesic left the Brisbane High Court in February 2019)