Zanders’s Superhero Story

Zander was diagnosed with KIF1A 6 years ago when he was 4 years old. It was an extremely long process as we knew he was different from about 6 months old, however no-one wanted to know about it. “Oh he’s just lazy” or “he`s just not bright” etc were the answers from health professionals.
It took 3 years to finally have the geneticist do tests. We were knocked back repeatedly despite neurologist requests. When it came back as KIF1A -it was such a rare disease and at that time there were only around 250 known cases world-wide.
Like any genetic disorder there is a scale of severity. Zander is on the more severe end of the scale apparently but really you wouldn’t know it. He is legally blind, being non-verbal it’s hard to determine what he can see. All we know is his eyesight is too weak for glasses to make a difference to his sight. I believe he can see lights, shapes and recognise faces etc.
He is non-verbal (by choice I reckon half the time 🤣) and he can’t walk.
He has the KIF1A frog hop and zips around like that. He attends a special needs school that caters for special needs kids only from kindy to year 12 and there are more teachers than kids, so we are lucky with that aspect.

All of this sounds like doom and gloom, but Zander is the happiest, cheekiest little kid on the planet. Whilst he can’t speak, he understands everything we say, and he knows who we all are.
KIF1A was widely regarded to be regressive but I’ve never seen any regression in Zander only progression. Very slow progression but progression all the same.

Looking back, when he was 2 years old, we nearly lost him. I was working away from home at the time and came home one Friday. Zander and his mum went to bed, his older brother went to bed, and I stayed up watching the footy. It was about 10 pm when his mum came and said there is something wrong with Zandy. I went into the bedroom to find him unresponsive. He was grinding his teeth, and his eyes were half open and looking to the left through almond eye lids. I placed him into the recovery position and rang the Ambulance. I’ll never forget them picking him up- his was limp and like a little tiny corpse. They fed tubes down his throat in our driveway and turned the sirens on and raced off into the night. His mum went with him, I stayed home with his brother who slept through the whole event.
He kept having seizures en-route to the hospital and when in the ER they gave him anti seizure meds and the response from the surgeon was ” if he wakes up in the morning, we can assess his situation “…. needless to say I didn’t sleep that night….

His brother , 4 at the time woke up the next morning slept through the whole thing. Asked ” where is mum and Zandy ” , I said ” at the hospital mate , Zander was a bit crook last night ” ….his reply ” okay, what’s for breakfast ” 🤣🤣
Anywhere fast forward to 2024 and Zander is a little legend, cheeky as hell, a typical fiery red head and he makes everyone a better human for being in his life.

Matty, Zanders dad