The Hume Highway has become an all-too familiar sight for Melissa and her family. Every few weeks for the past six years, they would make the long and arduous journey from their home in Canberra to The Children’s Hospital at Westmead to help their little boy. 

Six-year-old Charlie was born DiGeorge syndrome, a rare genetic disorder caused by a deletion on a segment on chromosome 22. He has an acquired brain injury, a heart defect, epilepsy, autism, and an intellectual disability. 

Melissa lost count of the number of hospital admissions Charlie had once it reached 100. Between his visits to Westmead, regular appointments in Canberra, and occupational therapy, physiotherapy and speech therapy sessions – Charlie’s family needed flexibility. 

And that came through virtualKIDS. 

During COVID-19, Charlie’s family began to use the Sydney Children’s Hospitals Network’s telehealth services to stay connected with his various treatment teams while within the comfort of their home. 

Each telehealth session saves almost 600 kilometres in travel and precious time for Charlie’s family. 

“Charlie has experienced a lot of trauma, so keeping him out of hospital as much as possible and in his home environment has really helped him have more of a normal childhood,” Melissa said. 

“Telehealth means that we don’t lose a whole day of his precious life for an appointment which sometimes only needs to be 15 minutes. It also means we can continue being a normal family – and doing the things that most people take for granted like going to work, going to school and spending time with our other children.” 

The family has been able to use virtualKIDS for appointments with the Brain Injury Service in Kids Rehab as well as for virtual appointments with general surgery and allied health services, like play therapy. Through telehealth, the team were even able to conduct an autism and intellectual disability assessment of Charlie last year, and assessment that previously would have needed to take place in hospital. 

Telehealth has also proven valuable for Charlie while in hospital, helping to connect various treating health professionals to observe Charlie at the same time saving multiple appointments.  

“With telehealth, Charlie has been able to have more consistent assistance with his diagnosis and treatment. It also means that they can see the way he interacts in his own environment which is very different from how he is at hospital,” Melissa said. 

“It’s certainly been a great model for us, staying away from hospital and letting Charlie have a normal childhood is one of our big goals for him. Flexibility means that we can use Hospital in the Home, palliative care and Telehealth all as tools to help him live his best life.” 

Although Charlie will always need the support of various medical teams, Melissa said his life is much more settled now thanks to the assistance of virtualKIDS and she is seeing that in his personality. 

“Charlie is so brave and very loved. He is gregarious, has an incredible sense of humour even with limited verbal skills and he really loves life. He spreads joy to everyone he meets and takes all the hard stuff in his stride.”