San Diego

Inspiring San Diego: Musician with Spinal Muscular Atrophy Sings for Others Fighting Debilitating Disease

Spinal Muscular Atrophy, or SMA, effects the body's ability to build muscle, making it extremely difficult for people with the condition to perform daily tasks, let alone play and record music.

James Ian is a gifted musician who makes singing and playing the guitar look effortless, but sharing his gift of music with the world is just part of his life calling.

He played all the instruments – drums, bass, keys, and guitar – on his 2017 album “Labor of Love.” What makes the feat more impressive is that he accomplished it while battling a debilitating genetic disease called Spinal Muscular Atrophy, or SMA.

"Folks with this disorder, we're missing a protein that allows us to build muscle so our muscles degenerate over time,” Ian said.

Ian has type three. Type one is the number one genetic killer of infants effecting one in 6,000 births.

"It's a devastating disease because it affects your major life functions and a lot of folks need help going about their daily lives,” he said.

Ian lives with a long list of challenges.

"I walk with a limp. I fall down involuntarily and I can't get up on my own. And getting up from seated positions, especially lower seated positions, is really, really difficult," he said.

Ian also has tremors, Scoliosis, extreme fatigue and muscle weakness, all of which make even the simple things, like lifting, plugging in his guitar or playing the keyboard an extreme challenge.

"With the keys, my hands, they twitch a lot and they cramp up and so, you know, hitting the right keystrokes is really difficult… I have to muscle through this from whatever little muscle that I have.”

Ian was diagnosed with SMA it when he was a teenager, and he says the disability kept him from forming relationships.

“That was a difficult age,” he said. “I was diagnosed with a major life-altering disability on top of all of the things that 15-year-olds are going through. I was really upset about it and I just was trying to find my place in the world.”

Though Ian felt low, he says it was his family and friends who lifted him up and helped him understand that others didn’t view him as handicapped.

“People didn't perceive me the way I perceived myself and people wanted to get to know me. They thought I was authentic and honest and, you know, really genuine,” he said.

His family also helped him realize that he could give a voice to others who might be struggling with the same challenges he was. Once he embraced his disability, he began to see the positives.

“It makes me unique. It makes me stand out,” he said.

The challenges he’s been up against have only pushed him to defy the odds. Doctors had told Ian that he probably wouldn’t be able to play the drums or pick a guitar, but “I was like, I’m going to show them that I can do it.”

He graduated from Georgetown Law School in 2010, another challenge of its own kind, but he’s never practiced a day of law in his life. Ian said he’s found his voice advocating for others with SMA who may not be as comfortable making their voices heard.

Right now, Ian works in sales at a San Diego cybersecurity firm, but he said disability advocacy through music is his passion.

“This is my calling. This is what I'm supposed to do with my life,” he said. “Over time, I've learned to accept it [SMA] and I've learned to honestly use it as a way to engage with others and raise awareness about the disability to help to raise funds for a cure."

Ian said his physical challenges have inspired many of his songs.

Willie Lee, CEO of Ian’s record label, 8412 Music, said watching that watching him fight through pain and do what others said he couldn't is an inspiration.

"His ability to persevere, you know, with having a disability is just remarkable…He inspires us to continue to move forward,” Lee said.

Ian has a “Cure SMA” logo tattooed on his left forearm that serves as a permanent reminder of his mission to increase SMA awareness and spread a message of hope to others like him.

"If you really want to do something, you know, put your mind to it. Put your heart into it. And what really matters is the belief in yourself and having faith and confidence in yourself to do it,” he said.

Ian says doctors tell him he may eventually lose mobility and end up in a wheelchair, but he says he's hopeful a new medication, Spinraza, may slow the progression of his disease.

Click here for details on James Ian's upcoming concert.

"Labor of Love" is available on Spotify and iTunes.

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