Monday, November 2, 2015

Update on Cole

SINCE we last posted about Cole Sundeen and the campaign to purchase an accessible van to "help Cole get there," Cole has continued to undergo treatment in the clinical trial at UCLA and the family remains hopeful as they approach the end of the rather grueling 12 weeks of Phase 1, which involve early morning commutes and overnight stays.

Meanwhile, our renewed efforts to highlight the campaign and raise funds resulted in almost $3,000 more in donations from staff, faculty - and students! Thank you!

Please continue help pass the word. To donate, click here: Help Cole Get There!

Consider placing the link on your Facebook wall and in other social media venues.

Rebel Girl first read about Duchenne Muscular Dystrophy in Peggy Wolfson's award-winning essay, "Moonrise" which appeared in The Atlantic in  2001.  In it, Wolfson describes life with her son Ansel, named for the famed photographer Ansel Adams. Wolfson writes," The name seemed apt; Ansel was, as people often told us, prettier than a picture, amber-haired and round-eyed, with a perpetually quizzical but serene countenance and the build of a slender but sturdy miniature football player."

A recent re-reading made Rebel Girl appreciate even more the daily challenges faced by Polly, Cole and their family as they make their way in the world.

I am at the Grand Union in Dobbs Ferry, New York, with my son Ansel, who is thirteen years old. It's raining. He begged to come, so I brought him, not really wanting to, because I had to bring his wheelchair, too: it weighs more than 200 pounds and isn't easy to maneuver into the minivan, even with the ramp. I have to wrestle the motorized chair until it faces forward and then, bending and squeezing into the narrow confines of the van, I have to fasten it to the floor with several clasps. By the time I have done this even once, I'm irritable. A trip to the supermarket means doing it twice and undoing it twice....
....Before loading the groceries I open the van door so that Ansel can get in the front seat, where he always sits if Joe isn't with us. He parks his chair at a distance from the minivan, so that I'll have room for the ramp, and starts to rise, laboriously. No, "rise" sounds too easy, like smoke going up a flue, airy, like yeast bread rising in the oven. Ansel does not rise. He shifts sideways in the seat and pulls himself up heavily, propping his eighty pounds against the armrest for balance. He leans with his left arm, twists his right shoulder around to straighten up, and brings his hip and buttocks to a partly standing position. Actually he's sort of bent in half, with his hands still on the chair's joystick. There is a moment of imbalance. His feet are planted far apart, farther out than his hips, and he needs to bounce back and forth a few times to bring his feet together. Finally he's up. He begins walking toward the door in his waddling, tiptoe way. His spine is curved quite a bit from scoliosis, his stomach is forward, his hands are out at his sides chest-high, his fingers outstretched.
His balance is so tenuous that his five-year-old brother, Toby, can knock him down. Sometimes Ansel will bellow, "I'm tired of everyone always leaving things all over the floor! Don't they know I'll fall?" It's true that we're a little careless about this. But Ansel will trip over anything—an unevenness in the sidewalk, the dog's water dish, some bits of food on the floor, things expected and unexpected—and sometimes over nothing. Sooner or later he falls. It's part of the routine. And the older he gets, the more he falls.
To read the entire essay, (and you should, says the professor of English!) click here.  It's smart and brave and yes, heartbreaking.

But do remember even as your heart breaks, that there has been medical progress since Wolfson wrote about her son Ansel.  Today, Cole Sundeen and so many others are benefiting from that progress and their lives are longer and more active.  And Cole, as a participant in the ongoing critical 12 person trial, is now an active contributor to even more progress. As Polly said to Rebel Girl not too long ago, our love makes us brave, courageous.

And we can help him get there.

Cole Sundeen at the David Geffen School of Medicine at UCLA.  October 28, 2015.

1 comment:

Anonymous said...

Thanks for the update. it looks like nearly $4,000 more has been raised since last week. Good news. Perhaps there can be a college-wide push for the holiday season. I am sure if more people knew , more would help. Maybe you can post this on the college FB page?

Old—and insane (—and when <I>eugenics</I> was in the air)

Young Frieda Flueckinger, c. 1893      Here's another post on the historical blog I'm doing for a friend. You might find it i...