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The family were referred to Cerebral Palsy Alliance by therapists at Monash Health in Melbourne when Jetson was 8 months old when they moved to Sydney. It’s been particularly challenging for parents Jet and Trish, getting used to a new home in a new city, coupled with a diagnosis of cerebral palsy, which they’ve had to navigate without family support and with English as their second language.
The family received a call from Cerebral Palsy Alliance Research Therapist Anna te Velde, which led to Jetson becoming part of the Cerebral Palsy Alliance Early Natural History of CP study, led by Professor Cathy Morgan, Professor Iona Novak and Research Therapist Anna te Velde.
In Australia, the aim is to have 300 babies in the study, and are working with teams in Italy, Sweden and the USA towards eventually including 1000 babies internationally in the study.
Enabled by essential donor funding, this study tracks the development of babies who have CP or high risk of CP over the first two years of life to help understand how these babies develop, and if and when they will learn to walk, talk and play.
So far, the multidisciplinary team has been tracked how Jetson’s movements, play, thinking, vision, communication and emotional skills have been developing. They’ll continue seeing Jetson as a part of this study until he is 2 years old.
In the meantime, Jetson is doing Occupational Therapy with Anna and Physiotherapy with Amy, and recently began Speech Pathology with Dot, and is coming on leaps and bounds. He’s recently learned to sit up by himself, to pull up onto furniture, walk along furniture. Dad Jet says Jetson is really determined to walk and is constantly pestering mum and dad to help him toddle around! Jet says:
“The main difference therapy has made has been having the reassurance of qualified guidance and feedback on what’s working and what’s lagging. Guidance on exercises for each week for us to incorporate is really helpful.”
Jetson loves to play and is learning how to play using both of his hands together. Jet says Jetson’s favourite toys are those that move with lights and music, and moves his hands to the music, which is very cute. Jetson also enjoys flipping books (and chewing them!), gets excited about his bath times and plays with the water.
More than anything Jet hopes that Jetson will be happy and independent enough to live without a carer, and pursue his dreams and aspirations without feeling limited.
This is the magic that can happen when
Great minds think differently!
