Brave, feisty, caring, sweet and determined.
Those five words describe six-year-old Ezekiel, who’s facing something most kids could not even fathom.
Two years ago, Zekie and his family – mum Sabrina, dad Joss and brother Lorenzo – discovered he had a brain tumour.
Sabrina says, despite all he has experienced, he is incredibly courageous and has a love for life and learning.
While the tumour is slow growing it’s affected his vision and the past couple of years of his childhood.
“It was January 2019 and their uncle, who is a GP, was watching them for the weekend and they were playing a game and he noticed that Zekie’s eye was twitching,” Sabrina said.
“He told us to get it checked; he didn’t really say much or tell us what he was thinking because he didn’t want to scare us, so we went to the emergency department.
“The next day we had to go back for an MRI and that’s when we found out about the tumour.
“We had no idea what type of tumour it was, we had to wait five days for the surgery and they were the worst five days of my life.
“It was hard waiting to find out what was going on.”
During the operation, the surgeons were not able to remove much of the tumour because of its location.
It is in his optic nerve and they were worried he would go blind, so they removed what they could and took some for a biopsy.
A couple of weeks later they got the results.
“We found out that it wasn’t aggressive but the location was a concern,” Sabrina said.
“He had to have surgery to have the port-a-cath inserted and then he started treatment, the chemotherapy.
“It was supposed to be 12 months of treatment but in the first three months the tumour actually grew a bit, so they had to change the treatment and now it’s shrunk and remains stable.
“Now, every three months he has to have MRIs and gets it checked out.”
For Zekie, the time in hospital was really hard, but thanks to Camp Quality he always had a few things to look forward to.
“They’ve been really good, they check in on us, they send lots of invitations to do fun things,” Sabrina said.
“Lorenzo has recently been on a four-day long Kids Camp with Camp Quality and had the most incredible time – he was crying that it was over.
“I think it was the best time of his life, he didn’t want to come home.”
Zekie was lucky enough to go on a Mini Camp at the weekend at Cameron Park Community Centre.
When the Newcastle Weekly spoke to him he was very excited.
“It will be fun playing the games and stuff and having lollies,” he said.
Sabrina said he was moving forward in leaps and bounds.
“He is doing really well at school, he loves to learn” she said.
“Since he began Kindergarten he’s started to get really interested in things, he loves reading and math.
“Nothing stops him, he gives everything a go, it is just normal to him.”
While the future for Zekie is unknown, Sabrina says they live in the “now”.
“We have to wait and see because we don’t know how he is going to go,” she said.
“If my brother-in-law wouldn’t have seen that twitching in his eyes we might have found out when it was too late.
“I don’t even want to think about what would have happened if he didn’t catch it when he did.
“You never expect your kid to have to go through that but now everything has become a routine and you kind of accept that this has happened.
“He has been very strong with everything.
“I am happy that his tumour is nothing aggressive, we just hope that eventually it will shrink and won’t affect his left side where he has good vision.
“We are really grateful, as much as it was really hard to go through, we now have a story to tell with a happy ending.”