Singer battles spinal muscular atrophy

April 2, 2008 7:20:32 PM PDT
A disabled teenager from China has a remarkable story to tell, about her medical good fortune in the Bay Area. Her singing career brought her to San Francisco for a performance that, quite literally, may have saved her life.

You may not recognize this 19 year-old singer, but in her native China, Zhan Jiahuan is an up and coming star.

She calls herself "Sunny" and says she started signing when she was only three.

"I just like it and want to keep it for my life," said Sunny.

"Take a deep breath," said her doctor.

It's remarkable that Sunny is able to sing given her condition. She has spinal muscular atrophy, or SMA. She's in a wheelchair.

"The disease affects the nerve cells in the spinal cord and these nerve cells are the ones that give out orders to contract your muscles," said Dr. Ching Wang from the Stanford University Medical Center.

Without the ability to contract the muscles, the spine begins to go any which way. That's an x-ray of Sunny's spine before her operation.

The disease is caused when both parents carry a specific gene. Then there is a 25 percent chance the child will be born with SMA.

1 in 50 people carry this gene, but the disease affects 1 in 6,000 children.

"Good Job, that's very strong," said Dr. Wong.

Dr. Ching Wang is a pediatric neurologist and a top SMA researcher. Finding Sunny was rather serendipitous.

Last October, Sunny happened to be on a singing tour in San Francisco. Her muscles were slowly crushing her lungs.

"I planned to make the last performance in my life, to come to America," said Singer.

But it would not be her last performance after all. Someone in the audience knew of Dr. Wang's research on SMA. Wang immediately met with sunny and her mom.

"I said 'No, I am not going to let you stop singing. I am going to do something about it,'" said Dr. Wang.

Dr. Lawrence Rinsky of Stanford performed posterior spinal fusion. Two titanium rods were inserted to help straighten her spine.

Here is what her spine looks like today.

The Bay Area Chinese Community was instrumental in getting the care sunny needed. With good medical care, she will be able to live a normal adult life and sing for many years to come.

Sunny will perform again at the First United Methodist Church of Palo Alto on May 10, 2008 at 8 p.m.

If you'd like to know more or help Sunny with her medical costs click on the link below.