From brain tumour to bike rides in Hawaii – Jett’s 12 month journey

Cerebral Palsy Alliance

By Tina Wild, Cerebral Palsy Alliance 

Crystal and Peter are the proud parents of three active boys – Braxton (7), Jett (5) and Cruz (22 months). To look at them now they’re like any happy, busy family, yet twelve months ago their story was very different. Diagnosed with a brain tumour last year, five-year-old Jett has battled chemotherapy and five brain surgeries, resulting in left side hemiplegia and third nerve palsy in his right eye.

“Jett was in a bad way, he was in a wheelchair, struggling to walk more than a metre or two, had severe left weakness and had lost all his fine motor skills,” says Crystal.  

Crystal and Peter were recommended to Cerebral Palsy Alliance (CPA) because of the organisation’s expertise with cerebral palsy and other neurological conditions. The combination of this expertise, Jett’s resilience and adaptability, and the unwavering love and support of his entire family and community, have helped his recovery.   

One of Jett’s first challenges to overcome through therapy was a significant motor impairment, caused by his brain tumour. He was having difficulty walking in a straight line and needed help walking over obstacles.

Supported by CPA experts, Jett started to achieve his goals, improving the use of his left arm, hand and speech, and maintaining his health throughout his chemotherapy journey.

Hydrotherapy proved to be an effective way of improving Jett’s cardiovascular fitness and strengthening of his left side.

Speech therapy sessions addressed Jett’s difficulties with counting, using accurate speech sounds, naming common objects, early literacy skills, and stuttering. Jett also presented with a slight facial droop on his right side which meant he had difficulty making an even smile and keeping his right eye open.

Jett has thrived with one-on-one bimanual, play and goal-directed therapy. By working with his occupational therapist, he significantly improved in left hand and arm coordination, which positively impacted his play, eating and self-care tasks.

“Jett’s family have worked incredibly hard to implement his physio, speech and OT during a challenging time with many hospital admissions, chemotherapy sessions and trips to Sydney. It has been great to be able to continue to support his family through this time and ensure Jett gets the benefits of early intervention after his surgeries,” says Claire Smart, CPA physiotherapist.

Just when the family thought they were getting back on track, another challenge presented itself: COVID-19, which threatened to derail Jett’s progress.

With social restrictions in place, the family were worried Jett would regress if he couldn’t continue therapy. They were relieved that CPA was providing their sessions via Telepractice (video). At first, Crystal (Jett’s mum) was unsure how these sessions were going to work, particularly physio, without physical contact.  

Crystal’s initial concerns were immediately alleviated after the first session:  

“Jett becomes very engaged in the Telepractice sessions; it’s almost as if it’s a normal physical session for him. It actually really surprised us. He’s taken to it like a duck to water and his therapists are able to get his attention and keep it for the whole duration.”  

See next page for more…

Leave a Reply

Your email address will not be published. Required fields are marked *