Cassius Kay is non-verbal, non-mobile and partially blind, so life can be frustrating for him. But, thanks to Satan’s Little Helper, he now has a place he can forget about all of that and float like a butterfly – just like a famous namesake of his once said!
Cassius is a child of the pandemic. Born during the first anxiety-laced year of Covid-19 restrictions, his health has been on the back foot since day one.
“He needed heart surgery at five days old, followed by an operation to fix a perforated bowel,” says his mum, Cheye.
Cassius also has severe hearing loss in both ears, is partially blind, non-mobile, non-verbal and has severe epilepsy.
“He’s two-and-a-half years old now and he can’t sit by himself, stand, crawl, walk or talk,” she adds. “He is also tube fed because he hasn’t learned how to swallow properly.”
Stuck in his body
Cheye describes him as a “six-month-old kid stuck in a three-year-old’s body”, which has made him very frustrated and confused.
Despite his long list of complications, Cheye says the most destructive thing is his seizures.
“He took 10 steps forward with his development but, when his seizures started, he took 15 steps back. He used to love playing with his toys but now won't touch them.”
That means she faces a daily struggle to entertain him.
“If I don’t keep him busy, he gets very cranky very easily,” explains Cheye. “It’s got to the point where I can’t leave him alone with anybody except my mum.
“Because he can’t communicate, it’s hard to know why he’s upset. Stressful is an understatement!”
Good things are coming
Thankfully, there is some light at the end of the tunnel. Cassius is on medication, which is helping, and he now has a place to relax, laugh and find his calm place.
“Cassius loves being outdoors, especially in his grandma and poppa’s hammock. It’s his happy place, but we don’t have access to one in our home,” says Cheye.
Satan’s Little Helper decided to change that. Cheye describes the gift as a “godsend”.
“His new hammock has been extremely beneficial and Cass just loves it. On his worst days, when he’s screaming and you don’t know why, you can just put him in it and it calms him down straight away.
“The last seizure he had was at 2am or 3am and he was so grumpy the next day, so we just popped him in there and he napped. Most of the time, he’ll come back from the hammock in a much better mood.”
The plan is to send Cassius to kindy when he turns three, which should help his social development. However, his medical future is uncertain. Genetic tests revealed a rare problem and doctors are conducting a study on him because nobody knows what it means.
But now he’s got a hammock for his own, there will always be a place he can go to escape the world and his frustrations.