Damian in the News

In September of 2011, we hosted the first Dream for Damian fundraiser in Canton, CT. Ramping up to the event, we did some press and got a couple nice stories out there about SMS. Here they are:

Kim Velsey’s story in the Courant about SMS and Damian.

This article ran in the town papers all over central CT which had a decided CTMQ angle to it.

Since online versions of papers archive this stuff, here are the articles for posterity.

West Hartford Couple Working To Raise Awareness Of Son’s Rare Genetic Disorder

Sept. 20 Fundraiser To Aid Smith-Magenis Syndrome Research Foundation

The Hartford Courant
September 17, 2011

WEST HARTFORD —

Five-year-old Damian Wood made his debut at Norfeldt elementary school one evening in late August. The boy walked unhesitatingly onto the playground and quickly disappeared into the mass of exuberant new kindergartners.

His parents, Hoang and Steve Wood, remained on the outskirts, surveying the meet-and-greet popsicle party for a moment.

Steve watched as the boy — his slight, wispy eyebrows arcing over enormous brown eyes, dimples hidden behind a frown of concentration — padded up behind a pretty girl with a pink ribbon in her hair. Damian gave the girl’s shoulder a delicate tap and she spun around, chased him, shouted gleefully, “I’m going to catch you!”

In that moment, it was easy to believe that Damian was just another 5-year-old who would someday receive scores of college acceptance letters or pin a corsage on his prom date.

But he wasn’t. Steve sighed. “We’ve been told we should warn him off affectionate behavior, because when he walks up to the popular girl in seventh grade and hugs her, she might just laugh it off, but maybe she won’t.”

When Damian was about a year-and-a-half old, he was diagnosed with Smith-Magenis syndrome, or SMS, a rare genetic disorder resulting from a partial deletion of his 17th chromosome. The absence manifests itself as a varying spectrum of physical, behavioral and developmental characteristics including delayed development, chronic sleep disturbances, low muscle tone, intellectual disabilities, and violent tantrums. People with SMS also tend to be highly proficient with computers and other technology. Only about 600 people worldwide have been diagnosed with it.

During tantrums, Damian screams, throws himself to the ground, flings objects and punches himself in the head, hard and repeatedly — self-injurious behaviors and a high tolerance for pain are almost universal features of SMS. With Damian, the fits of rage come on with shocking speed and pass just as unpredictably.

There is no known cure for SMS, but the Woods and other parents hope that research will lead to behavioral, emotional and possibly gene therapies to improve quality of life. The week kindergarten started, the Woods were in the midst of planning a Sept. 20 fundraiser for the SMS Research Foundation at the Flatbread Co. in Canton. If nothing else, Steve said, the event would raise awareness, an ongoing battle for families whose children are prone to confusing public outbursts.

“One of my daydreams is to be somewhere with him when he has a meltdown and for people to say, ‘Oh, he has SMS,’ ” said Steve. “Is that realistic? No. But there is a way to identify SMS and give some answers.”

Now that they have their second child, Calvin, born in April, the Woods recognize the strangeness of Damian’s infancy. Quiet, cute and small, he slept a lot and hardly ever cried. It was only when he started missing milestones one after another that they knew something was wrong, although it took months of testing to determine what.

“You can never be prepared for that kind of news. I just couldn’t process it, that it was this lifelong thing,” said Hoang. As hard as knowing was, she admitted that it was also a relief to have something to work with, and to find the support of an online community.

Over the years, the Woods have developed strategies to deal with Damian’s SMS, like having an exit plan for every outing and cataloguing tantrum triggers — directives, challenges, surprises, and Steve crossing his legs (although it’s OK if Hoang or others cross their legs). Sometimes Damian seems as mystified by his behavior as they are; at other times he appears to know exactly what he’s doing.

“We know he messes with us sometimes,” said Steve. “He pushes buttons like a 30-year-old jerk in a bar.”

Damian is slowly reaching the childhood milestones. He just started talking this year — his words come out as whispery pops supplemented by sign language — at the same time that he’s learning to read and spell, meaning that whole phrases and sentences tumble out together. Toilet training remains a challenge.

“We know Damian will never live unassisted, will never drive a car,” said Steve.

“You just adjust expectations. You want the best for your kids, but I’m not going to teach him how to drive,” he said. “We were making lunch the other day and we got to talking about how cool it would be when he could make his own sandwiches,” he added.

“We treat every day like a new day, every hour like a new hour, sometimes every 10 minutes like a new 10 minutes,” Steve said.

The day of the party, Steve and Hoang were hoping that they would not have to gather Damian in their arms, would not have to carry the raging boy past all the playing children and chatting parents as he punched himself in the head, leaving bewildered stares in their wake. They were hoping for a good hour.

They got 15 minutes before their first patch of trouble. Damian had left a popsicle dangling in his hand as he roamed the playground and, inevitably, a chunk fell off, prompting a cry of surprise and anger.

“I was afraid that would happen,” said Steve, gingerly removing the popsicle from Damian’s hand and kicking the melting lump of ice under a walkway.

“It’s OK,’ he soothed, trying to chase away the dark mood taking hold of his son.

Was it OK? Damian considered, the popsicle had vanished from view, the playground’s many attractions beckoning. His features smoothed and he ran off, finding the girl with the pink ribbon. He tapped her shoulder again and she chased him. He went down the slide after a long pause and some pressure from a line of waiting kids, then made his way to the swings, where he sat for a long time, drifting slowly, considering the chain, the sky, checking his shoe.

Hoang and Steve watched from a short distance. “Should someone tell him to bend his legs?” said Steve. “Or is that next year?” Hoang laughed.

Then Damian’s friend Sammy came up from behind and pushed the swing. Later, when it was time to go, there would be another tantrum, another rescue, but for now Damian swung gently, with Sammy pushing, for what seemed like a long time.

West Hartford parents, facing a challenge with child’s disorder, holding fund-raiser for research efforts

By DOUGLAS P. CLEMENT

When Steve and Hoang Wood of West Hartford became parents in 2006, they had no way of knowing that their lingering, and sometimes lavish, vacations would be replaced by two intertwined voyages that are vastly different than what they were used to.

Their often difficult, but sometimes joyful, evolution as people, parents and champions of Connecticut’s cultural gems will reach a narrative turning point on Tuesday, Sept. 20, at a fund-raising event in Canton.

From 5:30 to 9 p.m. at the Flatbread Company in The Shoppes at Farmington Valley, the Woods will be there to raise money for the Smith-Magenis Research Foundation. Anyone who stops in to dine, grab takeout or bid on some nice silent auction items can connect to a story that’s difficult to hear—especially for parents—but ultimately cathartic.

It centers on the couple’s 5-year-old son Damian and how the family has been transformed—first by his arrival, and then, about 28 months later, by his diagnosis with Smith-Magenis Syndrome.

It’s not a disease, nor a condition. In one online posting, Mr. Wood explains that “Smith-Magenis Syndrome is a complex neurobehavioral syndrome characterized by multiple congenital anomalies and behavior problems, including craniofacial and skeletal abnormalities, variable intellectual disability, self-injurious and attention-seeking behaviors, speech and motor delay, and sleep disturbance.

“SMS arises from a deletion of the RAI1 gene on the 17th chromosome,” he continues. “It cannot be ‘cured’ but the SMS Research Foundation seeks, through grant funded research, to find ways to minimize the effects of the deletion on people like our Damian and their families.”

The fund-raiser, which will be more free-flowing than structured, is to benefit the foundation dedicated to raising funds to create research grants specifically to target the genetic pathways of SMS, and to better understand the vast array of areas this missing gene

Because there is no cure, the goal down the road, as Mr. Wood explained, centers on looking for a way to manage the issues faced by children who have the syndrome.

That and spreading awareness. “Nobody has heard of it,” Mr. Wood said of SMS.

He and Hoang certainly hadn’t heard of it when Mr. Wood’s avocation as a writer took a new twist when Damian was 6 months old. With those long vacations curtailed by the restrictions of new parenthood, the Woods began looking for informative distractions closer to home.

What Mr. Wood discovered in Connecticut was a long and deep roster of often under-appreciated museums, ranging form world-class art museums to quirky one-room repositories of a single town’s or village’s history. In appreciation of what the Nutmeg State had to offer his less-mobile family, he launched a blog to chronicle the state’s offerings and spread the word.

Connecticut Museum Quest (www.ctmuseumquest.com) was an immediate hit, and Mr. Wood’s narratives about his visits to museums, along with hikes, discoveries of curiosities and more, began building a large and broad audience.

On the site, he explains his approach, especially after realizing there “are some gray areas regarding what exactly defines a museum.”

“Over time,” Mr. Wood writes, “I’ve settled upon a slightly arbitrary system of worthiness which is subject to change and difficult to quantify. And really, with over 650 museums to visit, who’s going to complain?

“I include anything that calls itself a museum, any town history “room” or display no matter how small (some are at libraries) but the most difficult determination is regarding art galleries,” Mr. Wood says. “Some are permanent galleries with always changing exhibits—my thought is if they are not in business selling the art, then it’s a museum. This mostly applies to college art galleries like the ones at Wesleyan, St. Joseph’s College, and University of Bridgeport to name a few. I really like the American Association of Museum’s compiled definitions and think my blog is pretty much in line with that.”

Mr. Wood has a full-time job and the blog doesn’t, and is not intended to, make money. Nevertheless, it has gained a different kind of currency—Mr. Wood’s quests, and his online journals about them, have become an integral part of parrying the effects of SMS and giving Damian the fullest and best experiences possible.

One aspect is the family’s determination to get Damian out in the world to experience the cultural riches close at hand, and the other is more strategic—given the effects of SMS, having Damian be active helps curb the prominence of some difficult behavioral issues.

In the case of the Woods, they can reach out to make a difference for their son and others with SMS by holding events such as the Sept. 20 fund-raiser—to help pay for research into ways to improve the quality of life for the children.

So they go on adventures every Saturday. Sometimes it’s just Mr. Wood and Damian, and sometimes it’s the whole family, which now includes Damian’s 5-month-old brother, Calvin.

“In [going on adventures] we’re spreading awareness,” said Mr. Wood, who recounted feeling gratified when Damian serves as a bridge that creates a closeness between visitors to the cultural resources and the staff and volunteers.

The core realization—something that, inexplicably, the world and even caring folks never seem to fully understand—is that “Damian may be different but he has a lot to offer.”

He’s a beautiful boy, and while Mr. Wood acknowledges that caring for Damian can be difficult, he said that the family celebrates the small successes, things other people would simply take for granted. “The highs are much higher,” Mr. Wood said.

While admitting that he and Hoang are grudgingly conceding that some of the cliches about caring for special needs children are true, it’s still perplexing to be asked how they do it. “It is hard, it is tiring, but as a parent it’s what you do,” Mr. Wood said. “You just adapt and more forward, and every day is a new day.” What else can parents do?

The SMS Research Foundation is a 501(c)(3) nonprofit organization founded in June 2010 by two mothers of daughters diagnosed with SMS. It is raising funds to create research grants specifically to target the genetic pathways of SMS and to better understand the vast array of areas this missing gene affects. For more information, see the Web site at .

There are no tickets or any cover charge for the benefit, which is open to anyone who wants to stop by. The Flatbread Company is donating 15 percent of its receipts that evening to the SMS Foundation, and The Olde Burnside Brewing Company of East Hartford in donating 100 percent of all sales of Ten Penny Ale.

Additionally, 100 percent of the funds raised through the silent auction go to the foundation.

Mr. Wood noted that only cash or checks—not credit cards—will be accepted for silent auction items. “Any other donations would be great,” he noted.