Family Stories


Jackson is a 12 year old boy who lives in Australia. Jackson has a rare brain condition called Agenesis of the Corpus Callosum along with progressive Motor Sensory Neuropathy and more recently, was diagnosed with a genetic mutation TUBB3. He also had an array of other disorders such as: mirror movement disorder, epilepsy, feet deformities, severe receptive and expressive language delay, and poor gross and fine motor coordination. Some days Jackson appears quite with it and can remain on task and other days he doesn’t understand instructions or know the names or images of objects/people, much like a person with Alzheimer’s.

Jackson was diagnosed with some of the above disorders in 2012. During this time, we also witnessed a decline in his ability to walk which presented Jackson with a large number of battles. Last year he underwent a major operation on his legs to extend his ability to walk. This operation saw him in casts and a wheelchair for quite some time, resulting in him needing intense therapy to gain the strength to learn to walk again. Whilst he is now walking with AFO supports, it is expected that he will eventually be confined to a wheelchair sometime in the future.

Jackson’s determination and spirit is not something you come across everyday and even with all the medical interventions, therapy appointments and treatments he regularly suffers through, he still manages to smile. He is an amazing little guy who is an inspiration to all he meets!