Right now, life feels like a blur for Jessica Ibrahim.
Her days are filled to the brim with therapy and medical appointments for her eight-year-old son Hamza.
And as a single mother with seven children, and having to stop part-time work to become a full-time carer for her son, Jessica tells Mamamia her stress levels are at an all-time high, both emotionally, physically and financially.
Two months ago, Hamza was told by doctors he would never see again. Sadly there were warning signs prior to the diagnosis - warning signs that Jessica says some GPs missed.
Watch: the importance of mental health for kids. Post continues below.
It was mid-June this year when Hamza told his mum he was dealing with some nasty headaches.
Concerned but not overly worried, Jessica kept a close watch. Then when Hamza started experiencing sudden vomiting - and the family realised it wasn't food-related or a bug - they booked a quick trip to the GP.
"I had also noticed that his balance was slightly off and I noted that to the doctor around the beginning of August," Jessica tells Mamamia.
"She sent Hamza off for some standard screening tests and also questioned if his diet was right. In the back of my mind I knew it wasn't a diet issue - there was far more to it. But you trust doctors and their judgement, and I didn't want to push. We went and saw another GP as well, but he made me feel like I was overreacting."
As the days went on though, Hamza's condition was worsening. Jessica still vividly remembers the moment she received a concerned call from his school in late August.
"The school called me and said Hamza was not safe to be at school. He had been banging into things and his balance was really bad, the teacher saying Hamza couldn't walk in a straight line. We later realised it was due to poor vision. I picked him up from school immediately and he had deteriorated badly. We went back to the GP for an emergency appointment and she sent us to the hospital."
After a series of tests, Hamza was diagnosed with a pilocytic astrocytoma brain tumour.
Thankfully the tumour was benign, but it was still severely impacting his quality of life, the sheer size of the tumour causing fluid build-up and pressure.
Due to significant swelling on his brain, Hamza underwent urgent surgery to remove the tumour. Another surgery then occured to place a permanent shunt in his brain, as it was not draining cerebral fluid on its own.
But the pressure in the brain associated with the tumour had already affected the optic nerves, impacting vision. After consultation with a number of specialists it was confirmed that Hamza's total vision loss is permanent, and likely cannot be recovered. It was really difficult news.
"As a result, he now requires full-time care, and daily assistance with simple tasks such as showering, dressing, walking, eating, and even playing with his little sisters," says Jessica. "I've made sure to be open and honest with him about what's happened, and it's been really hard. The worst thing for him was losing his sight. He's just eight."
As well as trying to cope with what has occurred, Jessica said it's been challenging to grapple with feeling let down by doctors. She is now advocating for more GPs to do further training on identifying brain tumour symptoms, as well as trusting and acknowledging a patient's concerns.
"It's so hard to deal with. I've tried to move past the emotions, but there's waves of sadness, anger and frustration. I just hope there's more education for GPs about monitoring these sorts of symptoms for brain tumours. I don't want this to happen to another child," she says.
While Hamza was receiving his diagnosis, a neurosurgeon at the hospital told Jessica that it wasn't uncommon for brain tumours to go undetected, with another young patient going to the GP nine times before being properly diagnosed.
What Jessica wants people to know is this - trust your gut, particularly your parenting intuition.
"Trust in yourself when it comes to advocating for your child when you feel something isn't right. At the end of the day, if a GP dismisses you, go to another GP or to the emergency department. You've always got the fear of going to hospital if it's not warranted or dire, but if you think something is wrong then it's well worth going. I wish I'd gone earlier."
Jessica says she's been getting support from close friends, as well as her ex-husband, Ali Akbar.
Ali tells Mamamia: "Hamza is one of the kindest and sweetest boys I've ever come across. He's extremely curious and very switched on.
"It's been heartbreaking and extremely shocking for our entire family with how rapidly Hamza's condition has worsened. The primary healthcare system completely failed us and now little Hamza has to pay the price for the rest of his life."
Right now, Jessica's loved ones are fundraising in a bid to get the necessary money to support Hamza and his future health. It involves getting an accessible car upgrade, organising accessibility support like a guide dog, and enrolling Hamza in a state-of-the-art school for kids with vision loss.
As for what brings them a small amount of joy right now amid the overwhelm, Jessica said that Hamza is still doing things he enjoys - just a little differently For example, he loves all things Harry Potter.
"We were reading the books together before this all happened, but now instead we're listening to the audio books. It's finding new ways to do things, and just trying to be really positive and focus on the things he can do," she explains.
"For me, my kids keep me going - all seven of them. Everything I do is for them."
To help contribute to the GoFundMe for Hamza, you can do so here.
Feature Image: Supplied.
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