When Food is Your Greatest Hurdle
The race to find the best nutrient for children with rare genetic disorders.
Supported by
Bennelong Australian Equity Partners (BAEP)
SCHF Greenlight matched gift
Millions of dollars are invested into the sports nutrition industry to ensure Olympic athletes maintain peak condition. Putting just a fraction of this funding into research for children with Fatty Acid Oxidation Disorder (FAOD) conditions would be life-changing.
A common cold or viral illness can leave these children in hospital extremely unwell, requiring rapidly aggressive treatment, intravenous fluids and specialised nutrition supplements to save their lives.
One in 10,000 children in Australia is born with the inability to process and use fat. If their body tries to generate energy from fat, these children can develop liver failure, heart failure, seizures, intense and long lasting muscle pain, and some will even die. Food affects their performance (life or death): for some, even the natural fat in breast milk can be toxic. Special supplements enhance their survival to make sure their body doesn’t run out of energy, especially when sleeping or exercising. They have regular hospital admissions, limited ability to participate in sport and physical activity and often experience social isolation. Families often become hyper-vigilant and suffer financial strain and medical ‘burn-out’.
Unlike sports performance nutrition science, there are no dedicated funding streams for rare genetic metabolic conditions. Consequently, there are few robust studies available to guide medical and dietary management for these patients and a significant lack in evidence-based treatments.
Thanks to the generosity of the foundation’s forward-thinking donors, this situation is set to change.
“Our patients may not be Olympians, but they need peak performance to have a chance in life,” said Metabolic Paediatrician at SCHN, Dr Khaustuv Bhattacharya.
As one of the first state-wide services to implement expanded newborn screening, the metabolic team at Sydney Children’s Hospitals Network has preserved lives that would otherwise have been lost. Using tailored medical and dietary management based on newborn screening and diagnosis, they are able to optimise a child’s growth and development in the first 2000 days of life.
Dr Bhattacharya, Senior Metabolic Dietician Kiera Batten and sports medicine expert associate Professor Carolyn Broderick will now lead a new research study to individually determine the best nutrient for each child.
By taking a precision medicine approach they aim to reduce the burden of FAOD on children and families by helping to keep kids out of hospital, reducing the risk of long-term heart and muscle damage and allowing them to take part in school sport, birthday parties and ‘normal’ childhood activities that other kids take for granted.
This pioneering research will also reduce costs to the medical system in the longer-term. Three children being treated at the Children’s Hospital at Westmead with this condition have had 70 admissions between them (240 days in hospital), costing the hospital system $850,000.
An Australian first, the study has the potential to extend its application to other rare but similar medical conditions.
Hear more from Kiera Batten and Dr Kaustuv Bhattacharya.
A common cold or viral illness can leave these children in hospital extremely unwell, requiring rapidly aggressive treatment, intravenous fluids and specialised nutrition supplements to save their lives.
One in 10,000 children in Australia is born with the inability to process and use fat. If their body tries to generate energy from fat, these children can develop liver failure, heart failure, seizures, intense and long lasting muscle pain, and some will even die. Food affects their performance (life or death): for some, even the natural fat in breast milk can be toxic. Special supplements enhance their survival to make sure their body doesn’t run out of energy, especially when sleeping or exercising. They have regular hospital admissions, limited ability to participate in sport and physical activity and often experience social isolation. Families often become hyper-vigilant and suffer financial strain and medical ‘burn-out’.
Unlike sports performance nutrition science, there are no dedicated funding streams for rare genetic metabolic conditions. Consequently, there are few robust studies available to guide medical and dietary management for these patients and a significant lack in evidence-based treatments.
Thanks to the generosity of the foundation’s forward-thinking donors, this situation is set to change.
“Our patients may not be Olympians, but they need peak performance to have a chance in life,” said Metabolic Paediatrician at SCHN, Dr Khaustuv Bhattacharya.
As one of the first state-wide services to implement expanded newborn screening, the metabolic team at Sydney Children’s Hospitals Network has preserved lives that would otherwise have been lost. Using tailored medical and dietary management based on newborn screening and diagnosis, they are able to optimise a child’s growth and development in the first 2000 days of life.
Dr Bhattacharya, Senior Metabolic Dietician Kiera Batten and sports medicine expert associate Professor Carolyn Broderick will now lead a new research study to individually determine the best nutrient for each child.
By taking a precision medicine approach they aim to reduce the burden of FAOD on children and families by helping to keep kids out of hospital, reducing the risk of long-term heart and muscle damage and allowing them to take part in school sport, birthday parties and ‘normal’ childhood activities that other kids take for granted.
This pioneering research will also reduce costs to the medical system in the longer-term. Three children being treated at the Children’s Hospital at Westmead with this condition have had 70 admissions between them (240 days in hospital), costing the hospital system $850,000.
An Australian first, the study has the potential to extend its application to other rare but similar medical conditions.
Hear more from Kiera Batten and Dr Kaustuv Bhattacharya.
Funds raised
$253,714
Project team
Kiera Batten – Senior Metabolic Dietitian
Kaustuv Bhattacharya – Metabolic Paediatrician
Carolyn Broderick – Staff Specialist in Sport and Exercise medicine at SCHN; Associate Professor, School of Medical Sciences UNSW Sydney
Beena Devanapalli – Senior Scientist
Ashley Hertzog – Senior Scientist
Ashleigh Mitchell – Senior Metabolic Dietitian
Sue Thompson – Clinical Specialist Metabolic Dietitian
Adviye Tolun – Principal Scientist and Biochemical Geneticist
Nancy van Doorn – Accredited Exercise Physiologist, SCHN and UNSW
Kaustuv Bhattacharya – Metabolic Paediatrician
Carolyn Broderick – Staff Specialist in Sport and Exercise medicine at SCHN; Associate Professor, School of Medical Sciences UNSW Sydney
Beena Devanapalli – Senior Scientist
Ashley Hertzog – Senior Scientist
Ashleigh Mitchell – Senior Metabolic Dietitian
Sue Thompson – Clinical Specialist Metabolic Dietitian
Adviye Tolun – Principal Scientist and Biochemical Geneticist
Nancy van Doorn – Accredited Exercise Physiologist, SCHN and UNSW
