Bold is not a word to be taken lightly. To be bold, a person must be brave. When it comes to being bold, Josh Brass is your example.
For Morgan and Abbi Brass alongside their two children Josh (10) and daughter Sophie (2), it seems bravery is the entire family’s preferred state of mind.
Eldest son Josh Brass was born with a rare, (1 in 25,000 children born) physical disability called Sacral Agenesis / Caudal Regression Syndrome. A condition that affects the mobility of his feet, leg, hips and spine.
The diagnosis posed an unexpected outlook at the beginning of Josh’s life which has required the use of mobility tools such as wheelchairs and walking frames 24/7.
“We didn’t know what to do.” his mother Abbi explains.
‘’He was born with his legs up around his shoulders, he’s missing several vertebrae in his back, and he has an extra pair of ribs,” she adds.
Morgan and Abbi were disappointed to discover that they were not eligible for financial disability assistance in Australia (regardless of the fact that Josh is born in Australia), neither Morgan nor Abbi are Australian citizens as the couple emigrated to Queensland from Oamaru before Josh was born.
Josh’s father Morgan remembers their initial struggle of not knowing where to go for assistance.
“From standing frames to walking frames and wheelchairs. We’ve had to fight to find it and find out where it was.” he says.
Fighting for Josh has had a clear impact on the family. There are no complaints from Morgan and Abbi, and they have also compassionately helped others in similar situations with their own costs by fundraising enough money to pay for wheelchairs for families in need. The fundraising goes predominantly towards other struggling Kiwi families in Australia but is not exclusive to just Kiwis.
Initially the family approached Centrelink in Queensland for help with the mounting costs of caring for Josh.
“They said no. Because Josh is born here to New Zealand parents, he’s a citizen of New Zealand by descent.” Abbi explains.
“It’s very hard when you don’t know where to go and what to do” adds Morgan.
The cost for the care of Josh has reached $140,000 so far, and Morgan Brass reflects on the differing challenges of using mobility tools that become unsuitable due to kids growing out of their size.
“With all the equipment it's very expensive.” he says.
“They grow out of it very quick and some families can’t afford to buy the wheelchairs, so they end up getting one that isn’t appropriate.”
Having faced these obstacles themselves, the family also loan or give away Josh’s smaller pieces of equipment to other families in need.
“With all of Josh’s old equipment we’re trying to hand it down to other families that need it. They give it back to us and then we find another family and pass it on to them.”
“Until they get the chair they need” says Morgan.
Abbi explains how she taught herself to provide Josh with the care required. She has self-taught herself on things like massage therapy and physical rehabilitation in order to keep Josh up to speed with his physical needs daily.
“We were told we weren’t allowed any more hospital physio once he turned one.” She says
“So, I then took it upon myself to become Josh’s physio.”
By the time Josh’s third birthday arrived he was beginning to show signs of improvement that baffled both Morgan and Abbi.
“I walked into the living room one day, and there he was, on the coffee table doing a handstand!” says Abbi.
She thought about the fact that Josh uses his body differently to most kids his age and the need existed to explore specific options that could help him move around effectively on his own.
The family acquired a pair of parallel bars to assist Josh with walking, but they were pleased to discover that he preferred to use them to be gymnastic, holding himself off the ground for long periods using his upper body strength to hold him upright.
Josh went from strength to strength and by the age of four he had earned confidence and willingness to try as much as any kid his age would, if not more.
“We kept telling him - if they want to look, give them something to look at!”, is what both parents said to Josh whenever he was feeling stared at by members of the public as he used his wheelchair.
Morgan reveals that he and Josh both discovered the world of WCMX (Wheelchair Moto Cross) after watching Aaron ‘wheelz’ Fotheringham on YouTube together.
WCMX was created by Fotheringham when he defied his disability by performing extreme maneuvers and tricks using ramps and rails with his wheelchair. Fotheringham’s ability to place challenged athletes in the spotlight inspired Josh to try it himself.
“The next day we went to the motorbike shop and Josh got himself a full-face motocross helmet” laughs Morgan.
“It was raining but he didn’t want it to stop him. He wanted to get out of the car and put the helmet on, and he did.”
Josh reveals his first experience attempting WCMX.
“I was spinning on one wheel. I was spinning really fast and I thought I was going to fall over but then I landed.” he says.
Morgan and Abbi decided to allow Josh to try anything and everything he was interested in. His wall is covered with memorabilia and awards he earned as he competed in various endurance races and sporting events.
“My medals are all from 5km and 10km marathons and triathlons and some of them I got for surfing.” Josh explains
“I want to do basketball again though.” he adds.
Josh may be doing extraordinary things for a ten-year-old, but like regular kids his age he has chores and responsibilities. There is no easy route for Josh and his parents would not have it any other way.
“It's important for everybody to be the best they can be.” says Morgan
“To live a healthy independent lifestyle.” adds Abbi.
The family work hard to share their success with other aspiring athletes in order to connect the disabled community of children together.
The Variety Kids Sports Camp was proposed by Abbi after she and Josh attended a similar event in the United States. Funding was approved by the Challenged Athletes Foundation and the camp had the green light
Abbi founded The Variety Kids Sports Camp shortly after her return and the camp has grown year by year.
“I wanted to expose these kids to everything Josh has been exposed to.” She says.
“Everything we’ve learned and all the people we’ve met. I have put it all together into this camp.”
Abbi explains the many different aspects of building disabled athlete’s bodies.
“We do personal training, health and nutrition and remedial massage because they need to learn how to look after their little bodies.” She explains.
Wheelchair skills are also a focus of the camp. The camp contains an engaging format which includes teaching kids how to access ramps and curbs safely and topics such as chair maintenance. The camp is aimed at normalizing these aspects of their disability by creating an environment that allows kids to engage with each other on an even playing field, so to speak.
“The kids can get together and talk to each other about their same wheelchairs or what wheelchair they’ve got. Josh can’t do that at school with his mates.” Morgan says.
“It’s putting the same kids together in the same place with good people.”
The camp brings new skills to Josh and Josh brings his skills to camp. He is viewed by younger challenged athletes as a role model and this is one of the reasons why this bold attitude has worked for Josh and his family.
“Even though he does always say to us, “Mum if I had one wish, I would wish to be an “able-bod”. Reflects Abbi.
“I said, mate! You can’t tell me any of your able-bod mates at school have done half the things you’ve done in your lifetime!”
“Always say yes to opportunities” is what his mum says.
Josh Brass says yes, boldly.
Words by Mark Shaw