By Cam Lucadou-Wells
Jack Ottens is a brilliant boy who can’t get a schooling.
Despite a life-threatening affliction, the Berwick 11-year-old is part of MENSA and has an insatiable curiosity for the stars, maths, insects and the natural world.
He has even submitted to the CSIRO to name an unnamed fly. He named it after his family – antisella ottensorum.
He wants to learn and be a part of school. For the past six years, he and his determined mother Christine have been fighting for it.
Jack lives an arterioveinous malformation (AVM). When it ruptures, it can lead to a potentially fatal deep brain bleed.
In 2016, the AVM twice ruptured. The first time his life was saved when rushed to hospital for emergency brain surgery, Ms Ottens said.
He remains at risk of a catastrophic brain bleed.
The family is exploring a potential lifeline of a refined radiation treatment, possibly interstate or in the US.
“The way Jack copes with it is amazing,” Ms Ottens said.
“I don’t allow him to be a victim. We want him to have as normal life as possible.”
However, Jack is often too ill to go to Berwick Chase Primary School – in between his weekly medical appointments.
In the meantime, he is left to learn largely by his own devices at home. He gets tuition for just one hour a week through the state-provided Visiting Teacher Service.
The family has unsuccessfully applied for more intensive assistance such as a teacher’s aide under the Program for Students with Disabilities.
Confoundingly, the criteria covers a “significant health impairment” but only those that require “regular paramedical support”.
The department has found Jack’s illness is not significant enough.
“I don’t think they want to approve anything for Jack because it opens up the floodgates,” Ms Ottens said.
“Instead of spending money on investigations and reviews, they could come up with a plan for him.”
Ms Ottens says even one hour of tuition a day would make a difference for the fast-learning student. It will help take his mind off his AVM and to keep up in the classroom.
She has pleaded for intervention from the Department of Education and Training as well as Education Minister James Merlino.
Both have sent her letters informing her of the Department’s commitment to inclusivity.
A Department of Education and Training spokeswoman told Star News the department and school staff would continue to work with Jack’s family to support his learning goals.
“When his health allows, Jack is supported by the school and the Department at his home to enable him to access the curriculum taught by his teacher at school.
“The school is working with the family to progress an application for evaluation in this year’s annual Program for Students with Disabilities round.”
Ms Ottens meanwhile says Jack is being set up to fail.
“The Education Department are putting it on the children to learn for themselves, on the families who are financially under stress and taking him to appointments.
“Like any other child, he has dreams of what he wants to do.”
To help fund Jack’s medical needs, the family has set up a crowdfunding page at https://www.gofundme.com/jackottens