Ari Kinarthy has a severe genetic disability that causes his muscles to waste away. He has been wheelchair-bound since age six - first manual, now electric.
At 23, his health is so fragile that the common cold puts him in the hospital several times a year.
But you wouldn't know any of that, listening to his debut album, The Lion's Journey, released June 12. Despite the very limited mobility caused by his Type-II spinal muscular atrophy, Kinarthy was able to compose and record jazz, rock and orchestral tracks, using a technology called Soundbeam.
He says it's given him a new sense of purpose.
"I love to create things, the joy of creation is really what inspires me," he said. "I never thought at the beginning that this would be a potential profession for me, but I do consider myself a composer and professional musician now."
Kinarthy demonstrates how it works, in the music-therapy room at the Victoria Conservatory of Music. He nudges a button on his chair that moves him forward and an electric guitar note rings out. A microphone-like tool senses his presence and transmits a signal to the computer, which has a library of instrumental sounds larger than any orchestra. As he slides backward and forward, the notes slide up and down a scale as though fingers are shifting along frets.
"I think Ari really found a voice with music," said Kinarthy's music therapist, Allan Slade. "Ari got super inspired and really dug in and started composing really complex tunes and interesting music. - As soon as the composing took off, we knew we were onto something."
Kinarthy is not your typical music-therapy client. Many VCM clients use Soundbeam to stretch the bounds of their physical disabilities - Slade asks clients with cerebral palsy to raise their arms higher and higher to emit different musical notes, for example. But Kinarthy says he uses his session primarily to make music with the technology, which VCM purchased for about $5,000 in 2006.
Still, there's therapeutic value in it. "It's building my confidence so much," he said. "This makes me feel like I can contribute to making people happy, when they like my music. That's the biggest thing."
Kinarthy began by remixing songs he liked listening to, like Funky Town. By 2008, he realized he could compose his own. By the next year, he had decided to produce an album.
But it hasn't always been a smooth road. Kinarthy had to push his CD release back twice because he was in hospital with a cold. Still, he's takes strength from overcoming obstacles such as that, even writing his feature song, Conquest, based on a seven-month period in hospital battling pneumonia.
Now, Kinarthy has performed before a full house at Victoria Conservatory of Music's Wood Hall, had his tunes featured at the 24-Hour Relay for Kids opening ceremonies and attracted more than 6,600 hits to his YouTube channel, with responses coming from as far away as Ireland.
He is already preparing another album, with only one and a half songs left to complete. The next one will be called The Lion's Roar.
"Ari means Lion of God in Hebrew," said Kinarthy. "So I really identify with the lion." email@example.com
ABOUT SPINAL MUSCULAR ATROPHY
Spinal muscular atrophy is a congenital disease affecting between one in 6,000 and one in 10,000 people. It causes muscles to waste away. The earlier the symptoms show, the more severe the disease. The average lifespan for a baby diagnosed with Type I, the most severe type, is only eight months.
Type II, with which Kinarthy is afflicted, is usually diagnosed before a child turns two. People with Type II will usually never walk, but lifespans vary so widely - some die in childhood, others make it well into adulthood - that there's no specific life expectancy.
The milder Type III is typically diagnosed between two and 12 years of age, although it may not occur until adulthood. Walking is usually possible for many years, though the gait may be affected. Life expectancy is often normal.
Adult-onset SMA typically progresses slowly and is not generally life-threatening.