Archive for April, 2009

Rare Diseases deserve Special Attention

Canada is one of the only countries without a plan to support people with ‘orphan’ disorders
Andre Picard, The Globe and Mail, Thursday, Apr. 30, 2009

Earlier this month, the nation was captivated by the story of Kaylee Wallace after parents of the gravely ill infant decided to remove life support and donate her heart to another dying child.

But Baby Kaylee lived and the media moved on.

Now she is thriving, despite the challenges posed by Joubert syndrome, a brain malformation that leads to developmental delays, breathing difficulties and motor-skill problems.

Baby Kaylee is now one of millions of Canadians living with a disability, and one of the thousands upon thousands living with a rare disorder.

Note here the repeated use of the verb “living.” Many of the pathos-laden stories about the case implied that living with a disability was a fate worse than death.

This is nonsense, of course. Baby Kaylee’s life, however different, can be as fulfilling and as wonderful as any other and it should be valued as much.

But this does not imply that it is easy to live with a severe disability or with a rare disorder. The indifference to the child once she was shifted from the “potential heart donor” column to the “disabled child” column is symbolic of society’s attitude.

The media coverage of Baby Kaylee focused on her parents’ heart-wrenching dilemma about removing her from life support. But the reality is that they face a far more heartbreaking plight in the struggle to help their child live a full and rewarding life.

If anything, Baby Kaylee’s predicament should open our eyes to the gaping policy void that exists for the legions of children and adults who face similar challenges.

Canada is one of the only developed countries without a plan to support people with rare disorders. Heck, in Canada, we don’t even have something as elemental as an official definition of rare disorders on the books.

Read the full article on The Globe and Mail here