March 18, 2022

Epilepsy Awareness Month: Azzrah’s Story (Part 2)

This is Part Two of Azzrah’s Story, which has been generously written by his mum Lisa. If you haven’t already, catch up on Part One here.

Lisa writes:

“About two years ago Azzrah was referred to Palliative Care Team for Quality of Life. This went hand-in-hand with the suggestion and referral for Azzrah to have Corpus Callosotomy – once again our world crumbled around us. Fast forward to November 2021 – D DAY. We knew it was going to be the hardest day and toughest challenge Azzrah has faced, but we truly had no idea what would unfold.

Azzrah’s Vagus Nerve Stimulator posed a big problem prior to surgery. An MRI was needed for navigation of the surgery but due to the magnets and the VNS implant being metal, the wires can potentially burn on the inside of the body… well let’s just says it’s not pretty – so no MRI. The surgeon had to navigate using an MRI from 2016. They encountered a bridging cortical vein which limited the operative window. The decision was made to do a complete Callosotomy, to potentially give Azzrah the best chance of reduced seizure activity.

We were warned of the swelling, but I don’t think you can ever be fully prepared for it. We would roll Azzrah every hour, as the swelling would form on whichever side he was lying. Azzrah’s left side of his mouth was dropping and we realised that he’d had a stroke, robbing him of any movement on his left side. What have we done? Our blame game started. Although Aaron and I went into this for Azzrah as a united front and we promised that we wouldn’t blame one another if things didn’t go to plan, it certainly didn’t stop us from blaming ourselves individually.

Swelling after Azzrah’s surgery.

What a rollercoaster ride we went on for 31 days. A lot of intensive therapies as an inpatient and many continuing today. Azzrah is making headway, he is fighting his way back. The next nine months will be defining times. A lot of things have become clearer and almost new for Azzrah. Although Azzrah still has seizures (the surgery wasn’t a cure, there is no cure), he has seizures less often. He seems to be able to concentrate for longer periods, he is more focused and is slowly finding his vocal sounds and trying hard to talk. It’s one step, one day, one week at a time for our little man and we will be right alongside him for each and every day.

Epilepsy can be so isolating, people still don’t know how to react or act. I wish people could see past any disability and see the amazing person not their disability. Teach your child not to be afraid of differences but to embrace and include, learn and then teach others. The way I see it, kids are the teachers for their generation. If we can give them a good platform to start with, they can then continue and make inclusion second nature for the following generations.

To this day we have never asked, why us? We have tried to navigate as best as we can, with Azzrah at the forefront. Our world was shattered and to be honest some days it still is. But we can’t let Azzrah’s diagnosis define him or our little ‘power of three’.

Watch this video below to see some of the incredible recovery strides Azzrah made with the help of the wonderful team at Perth Children’s Hospital.

Big thank you to Lisa for so eloquently and bravely sharing your family’s story, and for allowing Hannah’s House to be part of your lives.