JOSH Marshman will be watching the third annual Variety Cycle with great interest when participants pedal into Port Macquarie on April 5.
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The 13-year-old, diagnosed with a rare metabolic disease at birth, is living proof of the success that Variety fund raising provides.
The St Josephs Regional College student has severe and ongoing health issues including brain malformation, muscular dystrophy, hyperglycaemia, dysfunction of the autonomic nervous system, poor growth, loss of muscle coordination, muscle weakness, neurological problems, autistic spectrum, development delays, learning disabilities, gastrointestinal disorders and increased risk of infection.
So rare is Glutaric Acidemia Type II or GA2 that the disease was undiagnosed in NSW prior to his case.
While facing an uncertain future, Variety stepped in providing access to life-changing occupational therapy that was otherwise out of his mother Lynda Gamack's means.
"Without Variety's help, Josh simply wouldn't be where he is today," said Ms Gamack.
"The occupational therapist was pivotal in his transition to high school this year, where he attends a mainstream high school and is even amongst the gifted and talented students.
"She has also helped Josh through a key developmental period in his life, with him becoming a teenager while struggling with a body that is ultimately failing him.
"The occupational therapist has taken a lot of pressure off me as the sole carer and being in regional NSW there isn't a lot of help available.
"She has been a real advocate for Josh and his needs."
Ms Gamack said Josh's total reliance on her had created a number of confidence issues and could also be a catalyst to a meltdown.
"With the support of his occupational therapist, Josh can now wait at the bus stop for me without going into meltdown and he can even walk to the car to get something for himself too.
"In our situation, that is significant.
"Variety, through their donation and support, has given Josh confidence and the ability to function as a 13-year-old which is life-changing."
Mrs Gamack said Variety had also shone a light on GA2 that would help many people understand the implications of the disease and to perhaps widen the scope for support.
The Variety Cycle rolls into Port Macquarie on Tuesday April 5.
