Baby Charlie Thurlow is facing an uphill battle in his health, and his parents hope the community can help make a difference to their son's life.
The little boy initially presented as a normal healthy baby. He fed and slept well, and met the normal developmental milestones for the first few weeks of his life.
But at three months old, his parents Ben and Mary noticed how Charlie's development was not up to speed, compared wth other children his age. He could not turn his head from side to side, and showed obvious weakness in his neck muscles.
After no improvement in the following nine months, he was still unable to use his hands properly, sit or lift his head.
Initial genetic testing failed to provide a diagnosis. After visits to the paediatrician and neurologist, Charlie had an ultrasound, which revealed enlarged ventricles and an abnormally small cerebellum.
He started to lose weight and developed involuntary movements when resting - similar to that of Parkinson's and commonly referred to as dyskinesia.
A specialist confirmed his symptoms were consistent with microcephaly and global development delay, and Charlie was thought to have hyperprolinemia, a rare genetic disorder that prevents production of a key amino acid. This was later quashed.
Teething became particularly difficult, as Charlie could not seek comfort from grabbing at chew toys, and he was unable to roll.
The next solution to best control involuntary movements is deep brain stimulation, to influence movement patterns, but this cannot be done until a child is four years of age.
Charlie has now been referred to a movement and metabolic disorder clinic at Westmead Hospital to strengthen his abilities.
He requires access to specialised equipment including supportive seating and a standing frame.
Although progress appears to be minimal, his parents are determined to achieve the best quality of life for Charlie.
Members of the Australian Health Professionals, based at Hurstville Grove, is organising the fundraiser, and they will run in the Gold Coast marathon on July 7, to raise a goal of $100,000.