Canada

Extreme measures

Brenda Branswell April 2 2001
Canada

Extreme measures

Brenda Branswell April 2 2001

Extreme measures

Canada

Brenda Branswell

Rachel Capra Craig and her husband, James, lived a quiet life on their suburban Montreal street. They kept to themselves, looking after their severely disabled daughter, Chelsea, a shy 14-year-old suffering from Rett Syndrome, a rare neurological disorder that usually afflicts only girls. At most, the neighbours saw the couple taking Chelsea for a walk in her stroller or her father pushing her on a swing. Last week, the door swung wide open on their lives when James Craig arrived home and found his wife semi-conscious from an apparent suicide attempt and Chelsea dead, allegedly from a lethal cocktail of medications. A few days later, a haggard Craig, an announcer and producer with the CBC’s Radio Canada International, declined any comment to reporters at the Montreal courthouse. His wife, looking wan and lost during a brief court appearance, faces a charge of first-degree murder. The next step: a psychiatric examination to determine whether Capra Craig is fit to stand trial.

Their daughters death inevitably invited comparisons with the 1993 carbon-monoxide poisoning of Tracy Latimer in Saskatchewan. Her father,

Robert, now serving a life sentence for second-degree murder, argued he ended his 12-year-old daughters life to stop her suffering from a severe form of cerebral palsy. Whatever the circumstances behind Chelsea’s death, the tragedy once again raised troubling questions about the rights of the disabled. And again, it drew attention to the unrelenting pressures parents of

severely disabled children face. Many complain there are too few resources to help them cope. “If we just would get the support we need,” lamented Terry Boyd, president of the Eastern Ontario Rett Syndrome Association. “Instead, we have to pound down the bureaucracy out there to hear our voice.” Capra Craig, 46, refused to talk to police last week, but her husband told them she had been severely depressed.

The Craigs, like others in their situation, struggled to get help. They got some relief from their round-the-clock caretaking duties every other weekend, when a respite worker looked after Chelsea. The Craigs also tried to learn all they could about the syndrome: they belonged to Boyd’s association and Capra Craig attended numerous conferences. The disorder can be particularly devastating for parents whose seemingly healthy newborns appear to be developing normally. Then, six to 18 months later, the babies start regressing; they may lose basic motor control or their ability to vocalize. Many, like Chelsea, suffer from seizures. Kathryn Fournier, a Montreal nurse whose daughter Mélissa, now 8, started regressing at nine months, knows the heartache. “It was probably the worst time of our lives,” says Fournier. “You have a child you watch being stripped away from you piece by piece.” Nevertheless, the notion that Chelsea’s death might be described as a mercy killing rankled advocacy groups for the disabled. Hélène Rumak, co-founder of the Quebec group Disability, Life, Dignity, calls the term an oxymoron. “I don’t think killing is some kind of help to anyone,” says Rumak. And Fournier points out that Mélissa has taught her a great deal about life. “They are easy children to love,” says Fournier. “There is no malice in them. They ask nothing.” Still, Fournier and other parents well acquainted with the stress of caring for a Rett Syndrome child simply expressed sadness for Chelsea and her parents. Darlene Berringer, director general of a Montreal school Chelsea attended in the early 1990s, remembers Capra Craig as a loving, protective mother who struck staff as a fragile woman, sometimes frightened about her daughter’s condition. Caring for a child with Rett syndrome can be heart-wrenching. On a bad day, Boyd’s 13-year-old daughter, Kayliegh, can have as many as 60 seizures. But, Boyd says, they share many special moments as well—a cherished silver lining. EH