For over a decade, hospitals were like a second home to young brothers Hayden and Tyler.
Four years apart in age, they both started to develop a mysterious condition as toddlers, making them regular patients in hospital for a range of conditions including asthma, allergies and serious bowel problems.
‘At the beginning Hayden seemed to have a bad immune system, he was always an unwell baby. But as he started to develop, we were also having issues with gaining weight and growing. Then when Tyler turned two, he started to have similar issues,’ said Mum Belinda.
Both brothers would go on to see numerous specialists across different departments, including Gastroenterology, Endocrinology, Dermatology and Neurology, spending time in and out of hospital. They received ongoing intervention to treat their symptoms, but diagnosis for their complex issues would prove difficult.
‘We were in and out of hospital for illness, for new therapies, but nothing seemed
to be helping. At one point, Tylers bones were so weak that even holding his own body weight could cause a fracture.’
Then everything changed, when a new genetic test became available and revealed both boys had a rare genetic disorder, IPEX Syndrome, at ages 16 and 12-years-old.
With a diagnosis, doctors could initiate treatment for a cure and both boys would undergo bone marrow transplants. Their younger brother 9-year-old Cooper one of the donors.
‘We were so relieved to finally have an answer after so many years in hospital and be able to get the boys back to their lives.’
‘They had already missed out on so much school and been limited to non-physical activities. It was incredible to see them become healthy and do the things they love, like playing sport.’
‘The care and support we received at Monash over that time contributed significantly to the boy’s success story, they have gone on to be resilient young men with the world ahead of them. We want every child to be afforded the same opportunity to get well and live a long and healthy life.’
By joining us for the Monash Children’s Hospital Walk and raising funds, you will be helping us provide vital programs, services, and other supports that ensure our patients and families receive world-class care, receiving the right support at the right time.
To register and fundraise for the 2025 Monash Children’s Hospital Walk, please visit: www.mchwalk.com.au
