‘So close’: Qld family’s incredible mission to cure little girl’s rare brain condition
Devastated Queensland parents of a little girl with a rare degenerative brain condition have gone to extraordinary lengths to cure her, hiring their own team of world-class scientists in a move that could help save the lives of others.
QLD News
Don't miss out on the headlines from QLD News. Followed categories will be added to My News.
Chris and Golden Whitrod have gone to extraordinary lengths to save their little girl, who was diagnosed with an untreatable brain condition that is progressively robbing her of life – they hired a team of scientists to find a cure.
Tallulah Moon’s “no hope” prognosis of Hereditary Spastic Paraplegia (HSP) Type 56 (SPG56) at 14 months sent the family into a state of terror. They were broken and panicked.
Just weeks after the toddler had mastered walking and talking, the genetic mutation started to destroy her. Her legs stiffened, her tiny feet stopped dancing and her voice and infectious laugh evaporated.
That was when the Sunshine Coast couple made the decision that they couldn’t sit back and watch what horrors SPG56 had instore for Tallulah. Commonly, children lose the ability to sit, stand, walk or talk and can suffer seizures and the degeneration of nerve cells in the brain.
In a desperate search for hope, the Whitrods simply walked into the University of Queensland’s Australian Institute for Bioengineering and Nanotechnology (AIBN) and asked award-winning Professor Ernst Wolvetang if he could help Tallulah Moon.
That was 2020. Fast forward through four gruelling years of 60 hours a week in the lab, months of fundraising, the sacrifice of the family’s entire personal wealth – and now in 2024 a cure is “so close”.
The gene therapy that will halt the cruel disease in Tallulah and many other kids is at the manufacturing stage and clinical trials will begin within months if funding is available.
The brilliant mind of the professor spurred on by the brilliant and never fading smile of Tallulah has created a piece of magic.
“We need money to bring this home,” Professor Wolvetang told The Courier-Mail.
“Once we can demonstrate that we have found a cure for SPG56 we can use this same pipeline to help children with other genetic conditions.
“We are waiting to see if the therapy can reverse symptoms, we don’t know that yet but feel good about the ability to halt the progression of the disease.”
Professor Wolvetang heads the Stem Cell Engineering Laboratory at the AIBN and co-directs the UQ Centre in Stem Cell Ageing and Regenerative Engineering. His team is leading the way with brilliant work testing gene therapies on patient-derived organoids, which are tiny bean-sized mini brains that are duplicates of patients’ brains. The early testing of therapies are carried out on these mini brains.
“When we were given the ‘no hope’ prognosis for our daughter we asked the doctor if he knew of any researchers who might be able offer us something other than despair,” mum Golden said.
“He told us to google Ernst and that began the fight to save Tallulah. Unfortunately, while there are promising avenues for research, the lack of pharmaceutical interest and sufficient government investment means families like ours have to take on these missions ourselves.”
The Whitrods have poured every cent of their personal wealth into the mission – over a million dollars fuelled by an inheritance. They are also selling their home in Darwin.
“We now have learned to dream a different dream,” Golden said. “We love our home in NT but our family is our home now. We moved to the Sunshine Coast to be near the research lab and close to Tallulah’s medical appointments.
Meanwhile, Tallulah’s parents are constantly fundraising under their Australian Charities and Not-for-profits Commission registered charity Genetic Cures for Kids Inc (GC4K). Golden is now a full time mum to Tallulah and brother Finn and every spare moment is spent on the fight for Tallulah’s cure. Dad Chris has his own recruitment business and is equally dedicated to the cause.
The Whitrods have applied for a Medical Research Future Fund (MRFF) to continue the research. More than $5m is needed to allow Tallulah to be the first person in the world to trial the therapy, followed by a small-scale clinical trial for other children with the same condition.
The mission previously secured almost $1m from the MRFF.
“Without the determination of this family and their push to find a cure for their daughter this work would never have happened. They came to us at the brain institute and asked us if we could help,” Professor Wolvetang said.
“Being in contact with Tallulah since she was diagnosed has spurred the team on. She is the reason why I work 60 hours a week on this research and she supercharges me to keep getting back into the lab. Tallulah brings it home as to what is at stake.”
Ernst Wolvetang’s work with “mini brains” is revolutionary and he has high hopes of curing multiple diseases.
SEE THE WHITROD’S FAMILY’S GOFUND ME HERE
Originally published as ‘So close’: Qld family’s incredible mission to cure little girl’s rare brain condition
Join the conversation
Hackett’s brutal truth: ‘I look at my silver medals and still feel sad’
For 20 years, Grant Hackett has tried to outswim the sadness of coming second. The ‘eternal dissatisfaction’ of the elite athlete means he didn’t win silver, he lost gold. But that brutal reality of sport made him who he is today.
Read more
Why Queensland teachers are turning their backs on the classroom
Teachers are turning their backs on their career earlier than ever before, with almost 70 per cent of all those leaving doing so for reasons other than retiring.
Read more