17 year old Aaryan Shah was born with cerebral palsy

From conquering Australia’s tallest mountain to winning a silver medal, 17 year old Aaryan Shah has piled up the achievements.

In December 2018, Aaryan won a silver medal for Australia in the regional open for Boccia. The lesser-known sport involves red and blue leather balls, and the aim is to get the balls closest to the white jack. Boccia must be played sitting down because the sport is only played by athletes with cerebral palsy or other physical disabilities.

Aaryan was born with cerebral palsy, a condition which effects his muscles and movement. In the womb, the umbilical chord was twisted around Aaryan’s neck and resulted in the loss of oxygen to his brain. “It effects my balance and the way that I walk,” said Aaryan, “all the signals in the limbs fire together.”

“Cerebral means brain, palsy means weakness or paralysis or lack of muscle control, says Hailey Ho, physiotherapist, “it’s actually not a disease, it is not genetic, it is not a degenerative problem so it won’t progress, but the damage in the brain is permanent.” There is no known cure for cerebral palsy.

Aaryan began playing Boccia 6 years ago when his teacher told him about the school’s competition. “Me and a few of my friends, we had no idea what it was and we just decided to go along,” said Aaryan, “the head coach of Boccia… invited me to some camps and that’s where it all started.” Aaryan trained 6 hours a week in preparation for the 2019 regionals in Taiwan. He definitely wants to pursue Boccia in the future, “I want to go to the Paris Paralympics,” Aaryan said, “that’s a long term goal.”

2018 Boccia silver medal winners

Despite being in a wheelchair, the Year 12 student has had many past athletic achievements such as skiing, surfing and climbing Australia’s highest mountain. “I’ve gone up Mount Kosciuszko a couple of times,” said Aaryan. In 2015, the money raised by the Cerebral Palsy Alliance funded Aaryan’s first experience. At the Year 11 school camp in 2018, Aaryan went up a second time, “both times were different,” Aaryan said, “it was with the school and my friends… It’s different with the different people that you do it with.”

In December this year, Aaryan will be travelling to Machu Picchu with his family. His mother, Rima Shah, contacted the company Wheel the World, “it’s the first time that they’re taking people in wheelchairs,” said Rima, “we just want him to do whatever we can do.” Aaryan is interested in how they do it, “I’m excited because it’s another challenge,” he said, “it’s another milestone, another place that I’ve been to, another wonder of the world to see.”

Aaryan and his brother Sachin on Mount Kosciuszko

Aaryan regularly visits the gym, “I also swim on Saturdays and do a bit of sailing,” the Boccia-player said. About 4 years ago he did the City2Surf, a 14-kilometre charity running event. “I try to be as active as I can,” said Aaryan.

Along with Boccia, Aaryan also has a passion for cricket. “He’s been the ambassador for cricket NSW,” said Rima, “he’s met a lot of famous cricketers.”

Cerebral palsy impacted Aaryan’s childhood, “It made it kind of interesting,” he said, “I was a bit slower at doing things… I was less patient than what I am now… I really wished I could be running with everyone else… I soon realised that’s the reality, and you have to work with what you have.”

According to the Cerebral Palsy Alliance, every 15 hours, an Australian child is born with cerebral palsy, and currently 1 in 700 Australian babies are diagnosed with cerebral palsy.

Aaryan almost died at birth, “they didn’t say much in the initial diagnosis,” said Rima, “we really didn’t know what his life would become… it’s been a learning curve from day one.” Rima and Mehul didn’t know anyone with a disability, “we thought that he would get better,” Aaryan’s father said, “it was a place of denial initially. Then, it became “why me?”… and then my focus became… what can we do about it?” Aaryan’s parents approach his disability in different ways, “I look more at how he can achieve things,” said Rima, “and my husband looks more at the physical side of things.”

The 17 year old has had three major surgeries in attempts to help his condition, “after each surgery I had to relearn how to do everything again and get all my confidence back,” he said, “so that was a bit of a set back.” The first surgery was a selective dorsal rhizotomy performed when he was 5 years old, where they split the sensory and motor nerves in his back, he spent 6 weeks in hospital. Aaryan’s father, Mehul, said that they believed that the operation would solve a lot of problems, “we thought it would be getting better, but he became imbalanced,” said Mehul, “it will take longer for him to let go of that fear and address that balance issue.”

“At the start, like even just getting out of the bed and sitting in a wheelchair, with straps on, I kept thinking I was going to fall out,” Aaryan said. “Then slowly, every week I would walk in my walker 50 metres more… I kept strengthening myself…I got more and more confident.”

The second surgery put plates in Aaryan’s hips and staples in his foot, he also had his left calf lengthened. “I had to have the third surgery two years later to get the plates out,” Aaryan said, “my left foot started turning out… it didn’t exactly work, so that’s why my foot is still out like that.”

Along with a TedX talk, Aaryan and his older brother Sachin were guest speakers at the 2016 Westmead Children’s Ball. Following Jimmy Barnes’s act, Aaryan made a moving speech on living with cerebral palsy and the importance of self-acceptance. He spoke about “how the people at Westmead have helped… I got all my surgeries there… it was mainly just like how to live a positive life using ourselves as an example, my brother and I… Apparently it helped quite a bit.” The event raised roughly $750,000 for the Kids Rehab team. Rima says that “one of [her] proudest moments was when… they got a standing ovation for 10 or 15 minutes with a thousand people in the room, and so many tears…and it was just, really lovely.”

Aaryan and Sachin Shah receiving a standing ovation at the 2016 Westmead Children’s Ball

The 17 year old is currently in Year 12 at Killara High School and decided to complete the Higher School Certificate in one year. “A lot of people I know with cerebral palsy tend to do it over two years,” Aaryan said, “I get quite tired from like different things, it’s a little bit trickier for me, it takes a little extra time.” However, Aaryan said that he didn’t want to spend an extra year at school “I just want to leave… and start uni at the same time as everyone else.”

Aaryan’s plan after high school is to go into sports broadcasting. The past few years he has interned at Moelocco, a company which provides shoes for underprivileged children in India. Now, the 17 year old is volunteering at 2SERfm to produce stories and gain experience in broadcasting.

Aaryan’s cerebral palsy has been a learning curve for him and his family. “Challenges are daily,” said Rima, “looking after him and fighting for him. That’s the hardest thing…fighting for his rights… fighting for therapies, fighting for access at school. The way you overcome it, is basically, Aaryan. He is just such an amazing person, you look at his face, you talk to him, you see that he’s such a patient person and what he’s got to give to the world, and then you think that it’s all worth it.”

Aaryan’s speech at the 2016 Westmead Children’s Ball