IS IT a monkey? Is it a robot? No, it’s Darcy Scott – and he and his classmates are on a mission to make sure they keep in touch while he battles a serious illness.
Darcy, 7, has aplastic anaemia and hasn’t been able to attend classes since October last year, but his Nemingha Public School mates and teachers haven’t forgotten about him.
Darcy’s seat has been occupied by a Monkey in My Chair – when it isn’t on some adventure, that is – and he’s recently started virtually attending his Year 2 classes through a telepresence robot.
Darcy’s mum Karli Scott said:
“Obviously it’s not as good as being in the classroom, but it can brighten up his day a little bit.”
Darcy had a blood test late last year because he’d been pale and bruising easily.
Mrs Scott and husband Andrew were told it showed a blood cell disorder and Darcy had to go to John Hunter Hospital immediately.
Darcy and his mum ended up in Newcastle for three months.
It’s unknown what caused Darcy to develop the condition, but Mrs Scott described it as when “the bone marrow basically goes to sleep; it just stops working”.
“Bone marrow is what produces your red blood cells, your white blood cells and your platelets – and without those things, you can’t survive … It’s your worst nightmare, and it comes true.”
Big sister Joanna, 9, and little brother Harvey, 2, were tested for bone marrow compatibility.
They were found to be a perfect match for each other, but not for Darcy.
Darcy underwent immunosuppressive therapy for five months along with regular blood transfusions.
“His kidney function was getting worse, he was vomiting every day; it was just awful.”
That protocol has been stopped and Darcy is doing well for now, but a bone marrow transplant or further immunosuppressive therapy might be on the cards in the future.
In the meantime, he unfortunately can’t attend school due to the risk of infection; and due to the risk of injuries, because his lack of platelets would mean excessive bleeding.
KEEPING IN TOUCH
Mrs Scott, a high school teacher, homeschools him using teacher Tracy Gooch’s lesson plans and resources, YouTube and even Netflix documentaries.
Darcy said it was “good” having mum as a teacher: “She lets me have a choccie.”
But Mrs Scott said he missed school and his classmates, especially his bestie, Harley.
The telepresence robot is part of a MissingSchool pilot aiming to keep seriously ill students and their classrooms connected.
Darcy can see his peers and teachers, join in group work and even move the robot around, but the family’s still working out some NBN issues – and Darcy’s still learning to “drive”.
“I basically just bump it into Mrs Gooch,” he said.
As for the stuffed, life-size monkey, “The other kids play sport with him, they take him for sleepovers, he’s been to gymnastics, Mrs Gooch took him home for a bath and hung him on the line – he even got to go in a police car and be handcuffed,” Mrs Scott said.
“He gets photos … It’s just to remind the kids that Darcy is still out there.”
ABOUT THE TELEPRESENCE ROBOT:
- MissingSchool is a parent-founded, not-for-profit organisation that aims to keep seriously sick kids connected to their regular schools
- It launched a telepresence robot pilot in September with funding from St George Foundation’s Inspire Grant
- The robot lives in the student’s classroom, and is operated and moved in real time by the student on their device from the remote location (home or hospital)
- So far, 11 robots (including five in NSW) have been placed in schools to support 14 students
- MissingSchool has processed more than 50 applications across Australia while it works on approvals for the use of the robots from state and territory education systems
- In general, any internet connection that supports video calling, like Skype or Facetime, is sufficient to operate one
- MissingSchool is in talks with potential partners to support eligible students who do not have internet connection at home
ABOUT MONKEY IN MY CHAIR:
- It is a program originally developed, in honor of a seven-year-old Arizona girl who died of a brainstem tumour, for preschool and primary-aged children who miss school because of a cancer diagnosis
- The child receives a free “monkey kit” that includes a big stuffed monkey that takes their place in school when they can’t be there
- The kits also include a book to help teachers explain to students the situation their classmate is facing and how it affects them, and a teacher companion guide
- The child also receives online access to Monkey Message, an online portal where photos and documents can be shared, fostering communication and interaction