WHEN Tom and Annie Young named their son Cohen – meaning brave – they didn’t know how accurate they were.
Diagnosed with autism and cerebral palsy, the 8-year-old Woodberry boy had a fight on his hands from day one.
Now, after years of struggle, his parents have been forced to ask for help from the community.
Cohen’s cerebral palsy has worsened over the past year.
He has trouble dancing – a pastime he loved sharing with his 12-year-old sister Imogen – not to mention his difficulty playing soccer, or even just walking.
Cohen’s solution could rest on a surgery called the Strayer procedure where the doctor cuts the gastroc tendon, relaxing the muscle, with the hope it heals in a lengthened position.
It wouldn’t be a cure, but would relieve pressure in his leg, improving mobility.
In October, after a lengthy waiting game, a doctor urged them to seek help through a private hospital.
To their surprise, the surgeon said he could operate as soon as November 28 at Warners Bay Private Hospital – but then there was the significant problem of paying for what would be a costly procedure.
Mrs Young often volunteers at Maitland Senior Citizens Centre painting nails, and never wanted to ask for help.
But, her friends and women at the centre encouraged her to do it for Cohen.
“He deserves it,” they told her.
So, Mrs Young created a Facebook page – Cohen The Brave, which links to a GoFundMe site where those interested can donate towards Cohen’s treatment.
But, in a cruel twist, Cohen’s problems aren’t the only ones Mrs Young has to deal with.
Cohen’s sisters – MJ, 17, and Imogen – have health concerns themselves, but are often looking out for their little brother.
MJ suffers from dyspraxia and autism, and Imogen has ADHD.
Sometimes Imogen has to carry Cohen on her back to the car so Mrs Young can drive her to school.
But for now, it’s Cohen that keeps Mrs Young up at night – literally.
On an average night, Cohen doesn’t get much sleep.
Mrs Young said she could count on one hand the amount of times she has slept through the night since her son was born.
The pain of his muscles contracting keeps him, and his parents, awake.
“He maybe gets two, three hours of broken sleep a night,” Mrs Young said.
“I will wake him up in the morning to take Imogen to school and then we’ll come back, and I will homeschool him.
“But, a lot of the time, he just can’t even sit up at the table because he’s too sore and tired, so he’ll go back to bed.
“He could stay in bed all day sometimes – on the worst days he doesn’t get out at all.”
From his lack of sleep, to continual appointments, to spending days in bed, there isn’t much time for Cohen to enjoy his childhood.
His parents hope Tuesday’s surgery will remove some of the pain, allowing him to live a vibrant life again.
“He should be able to get his heel almost to the ground, and walk in a normal position,” Mrs Young said.
“But, we’re not sure how that will go yet, because even the surgeon doesn’t know until he gets in there.
“There’s a big risk he could become too weak, and we won’t know about that until it happens.
“He might not be able to walk at first.
“You have to build up your muscle again.”
Mrs Young said she had to fight and remain upbeat, adding even the doctors were sceptical at first.
“You have to fight for everything, just to get people to listen and do things,” she said.
His parents are not sure of the total cost of Cohen’s care.
However, donations on their GoFundMe page have reached almost $2000 of their $10,000 fundraising goal.
Even for a child without autism, going into a surgery room full of people would be scary.
For Cohen, it has resulted in him rushing out of the building terrified before treatments.
He needs regular medical appointments, including speech and behavioural therapy, leg braces and casts, and Botox injections.
His left leg is now longer than his right, and his calf muscles are constantly contracting, giving him high tone, and knots in his legs.
The casts would normally force his foot lower to the ground so it has to stretch, but he can’t wear leg braces because his muscles are too tight.
There was growing confusion between the NDIS and the health system about who was responsible for his treatment.
The back-and-forth conversation meant Cohen began losing valuable consistency in his treatment cycle.
“He’s now at a stage where [casting] can’t work, so they have to cut the muscle,” his mother said.
In the meantime, the pain is increasingly unbearable.
Not only for Cohen, but also his parents, who hate seeing his distress.
But, they are a strong family, with a big perspective on life.
After sharing their story, Mrs Young takes a moment to reflect on those who are struggling more than her family.
Cohen loves his comic superheroes, and once dressed as Thor for a fundraiser supporting a friend with terminal cancer.
“There’s always someone worse off than you,” his mother said reflectively.
To donate, visit https://www.gofundme.com/cohen-s-leg-surgery-and-rehab-fund