MICHELE NORRIS, host:
Punk rock often conjures images of angry, cynical musicians railing against the materialistic world. But that music community, and the scene that grew out of it, take on quite another demeanor in support of their own. Just ask J. Robbins and Janet Morgan, a Baltimore couple with a young son facing a serious medical challenge.
NPR's Jacob Ganz has their story.
JACOB GANZ: On a recent night, a Washington, D.C. club was packed for a reunion show by the Dismemberment Plan. For fans of independent rock, the reunion was a big deal. For the band, it was a chance to show support for their former producer.
Mr. J. ROBBINS (Vocalist and guitarist, Jawbox): My name is J. Robbins. My…
(Soundbite of cheers)
Mr. ROBBINS: My son Callum is the reason for this show.
GANZ: J. Robbins is probably best known to some indie-rock fans as the singer and guitarist in the band, Jawbox.
(Soundbite of song "Reel")
Mr. ROBBINS: (Singing) Listen, there is no use in trying to explain.
GANZ: Today, he spends most of his time producing. He operates a small recording studio in Baltimore and he and his wife, Janet Morgan, also play in the band called Channels. Last fall at a picnic, the couple noticed that their son Callum wasn't moving around as much as the other kids his age. Robbins says they took him to see a doctor who returned a devastating diagnosis.
Callum has Spinal Muscular Atrophy, a disorder caused by the near absence of a protein that helps the brain communicate with the body.
Mr. ROBBINS: Intellectually, he won't be affected. He stands a very good chance of being really bright, sociable, awesome guy, you know, but he's not going to be mobile.
GANZ: The primary symptom of SMA is overall weakness. In the worst cases, newborns can have troubled breathing and swallowing. But later, says Callum's doctor at Johns Hopkins Hospital, the biggest threat comes in a chain of vulnerabilities. Underdeveloped trunk muscles lead to a small ribcage, which results in low-lung capacity, which means a cough can more easily turn into pneumonia. Some people with less severe types of SMA do live into middle age, but 95 percent of babies diagnosed with Type 1 SMA don't live to see their second birthdays.
Ms. JANET MORGAN (Vocalist and Basist, Channels): When we saw the specialist at Hopkins, Doctor Crawford, he said yeah, it's Type 1. And I remember that being completely crushing. You know, it was a double bomb.
GANZ: Morgan stays at home and Robbins has adjusted his schedule to accommodate Callum's physical therapy. But an indie-rock producer's income doesn't leave them a lot to work with. The family pays for their own insurance, but realized early on that the expenses could still bankrupt them. That's where Kim Colletta came in.
Ms. KIM COLLETTA (Owner, DeSoto Records): I knew they'd never do it themselves and I just want to, as a friend, just to help them out that way.
GANZ: Colletta and her husband played in Jawbox with Robbins and now run DeSoto Records. What they did was post a notice about Callum's illness on the label's Web site and asked for help through a link for donations.
Ms. COLLETTE: I remember waking up the next morning and checking the amount in the PayPal account and realizing, wow, these are people whose names I don't know anymore. And I started getting e-mails saying, we'd like to do a benefit show in Chicago, Los Angeles, Portland, Boston.
GANZ: For J. Robbins and Janet Morgan, two people who had given their lives to independent rock, indie-rock was giving back. At the benefit reunion in D.C., the Dismemberment Plan's lead singer, Travis Morrison, said that Robbins gave the band guidance when they were just kids.
Mr. TRAVIS MORRISON (Lead singer, Dismemberment Plan): It's not all about when you were in that band when you were 24. And I think, well, who do I know in the rock world who just wants to be involved in music day in and day out. And the first one I can possibly think of is J. Robbins. So he's a spiritual beacon for me. So, I don't know, his kid - we had to play this show. So we want to say thanks to Jim.
(Soundbite of cheers and music)
GANZ: At that show, the first that Robbins and Morgan have been able to attend, they set up a table to take donations for an SMA charity. They've also started a blog charting Callum's progress with links to half a dozen other SMA Web sites. Their lives now balance outreach with therapy for Callum, and because he's so vulnerable, a guarded existence at home.
Ms. MORGAN: We don't want him to grow up in this bubble. We want him to experience life so on that level, we've - we spent a lot of time on our own with him, hanging out at the house, walk through the park, feeding the ducks, you know, all pretty normal stuff.
Mr. ROBBINS: You know, I mean, I think when we first found out, the big crushing picture was - I was thinking about all of this stuff that would never happen, you know. Oh, I'll never teach him to ride a bike. He's never going to do this. He's never going to do that. But within the first six months of his life, he already did something incredible, which is he made me really glad to be a dad.
GANZ: Next week, Callum celebrates a milestone. He turns 18 months old. In a blog entry for his son's first birthday, J. Robbins wrote, I don't see how Callum will ever grow up to be a properly cynical punk rocker since he is already experiencing undeniable proof that at least some people are essentially good at heart.
Jacob Ganz, NPR News.
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