Devon Gagged

January 29, 2009 permalink

Susan Clairmont, who on January 22 published and article we called Hatchet Job on Devon tried to balance the story by reporting it from Devon's side. She was thwarted by the judge, who ousted her from Monday's court hearing. Devon cannot speak in public about his own life. The press can tell all of Dominic Verticchio's side of the story, but none of Devon's.

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A very sad story waiting to be told

Media ban on boy's condition 'unfair'

Susan Clairmont, The Hamilton Spectator, (Jan 29, 2009)

First, the boy was ordered to have chemotherapy against his will.

Now, he is being ordered to stay away from the media against his wishes.

He feels, according to his parents, he has no control over his life. He is tired and frustrated.

And he wants to share his story.

He wants to explain how he feels. He has written poems. And songs. Some are about cancer. Some are not. Either way, a judge says he cannot have an audience. Even if his identity is kept secret.

In Justice Alex Pazaratz's closed courtroom Monday, the boy's case was discussed for the first time in eight months. Last time, the courtroom was cheek-to-jowl with media reporting on the controversy.

This time, I was the only journalist present. And I was ordered to leave. Even though the boy's family told the judge they wanted me to stay.

Politely and patiently Pazaratz -- who was once a summer intern at The Hamilton Spectator -- explained why I was getting the boot. It was "a settlement hearing" and therefore an "off-the-record" discussion of sorts about the boy's future. Reporting on what was said could compromise the decisions of future lawyers and justices who may become involved with the matter. And may inhibit the parties from speaking freely.

The judge added that, last spring, when he allowed media in his courtroom, "this case cried out for the press to have an understanding of the matter."

But now it is different.

"I wouldn't want you to infer that we don't want you here," he said. "Not that we're trying to hide anything or promote secrecy," but rather it is about "protecting the integrity of the process."

And then I was told to leave the court so a little boy's life could be decided upon.

What I missed was this: Pazaratz once again ordered the Children's Aid Society to watch over the boy. For at least another 12 months, the agency will make all his medical decisions.

As well, Pazaratz clarified an earlier order that prohibits the boy from being identified in the media or from having any direct or indirect contact with the media. After hearing the boy's parents say their son wishes to have his writings made public, the judge said his previous order prohibits that from happening.

The tug-of-war drama of this boy's cancer battle is well known by now. He was diagnosed with leukemia when he was seven. He went through chemo and it made him sick. His cancer came back last spring, when he was 11. He remembered what chemo was like and said he didn't want it again.

His parents supported his decision.

Even though the boy is young, has fetal alcohol syndrome and mental health issues. Despite a psychiatric review that determined the boy was incapable of making an informed decision.

Doctors said, without treatment, he would die within six months. With it, he had a 50 per cent chance of survival. So doctors went to the CAS, the CAS went to court and, last May, Pazaratz ordered the child welfare agency to make decisions pertaining to the boy's medical care.

And so the boy had chemo.

He is 12 now. Finished with chemo at the hospital but continuing to take medication at home. He still doesn't want it. His parents still back him up. How is the boy doing, you ask?

Well, according to his parents, not well. They say his eyesight is poor, his lungs are infected, his memory is failing, he is having trouble walking. They blame chemo.

According to Dominic Verticchio, CAS executive director, the boy is doing well. Rather than palliative care, he is now getting preventative care.

What is the truth? I'm not sure.

"This story has been very publicized and I think the public has a right to know what is going on with this child," says the boy's stepmother. She accuses the judge of being "unfair" and the CAS of "lying" about her son's condition. She believes that only by having the facts of the case made public -- while still keeping her son's identity private -- will the truth come out.

And then there are the songs and poems written by the boy himself.

"He wants them published," she says. "And he wants to see it happen. A year from now, we'll be in court again to talk about it again, but what if a year from now he's dead?"

Susan Clairmont's commentary appears regularly in the Spectator. sclairmont@thespec.com 905-526-3539

Source: Hamilton Spectator