Clement vows to help boy with rare genetic disorder

The federal health minister is vowing to help an 11-year-old boy with a rare genetic disorder whose family can't afford his treatments.

Mackenzie Olsen has Hurler-Scheie syndrome, a genetic disorder that causes toxins to build up in his cells.

He made headlines a year ago when a free clinical trial ended that had provided him with an expensive, potentially life-prolonging drug.

The enzyme drug, called Aldurazyme, costs $17,000 per week.

• FROM JULY 18, 2005: Review committee rejects expensive experimental drug

The syndrome is caused by the lack of an enzyme called a-L-iduronidase, which helps the body recycle cells after they die. Without it, cells don't break down and deposits are stored in virtually every cell of the body, causing progressive damage to the heart, bones, joints, and respiratory and central nervous systems.

A year ago, the Calgary Health Region agreed to cover 40 per cent of the treatments, but no one came forward to pick up the rest of the tab.

The boy's father Ray Amato said he is disappointed with the new Conservative government for not doing more to help his son.

"They've got to know the battles we've been going through, because weren't they the official opposition encouraging the government to help us?"

Health Minister Tony Clement said Sunday he doesn't want Mackenzie Olsen's family to think he's ignoring them.

Last week, the federal and provincial governments reached a three-year deal with two drug companies to create a $100-million fund that will cover expensive drugs for another rare disorder called Fabry.

Clement said he hopes to announce a similar program for victims of Hurler-Scheie syndrome soon, but he's trying to get the company that makes the boy's drugs to help fund the program.

"So we are waiting word from the manufacturer that they are interested in doing so."

Amato said his wife Mary Anne can't sleep and when she's awake, she's often in tears.

Olsen lives on the SikSika Reserve.