Family lives with constant worry, Life of son, 4, tied to safe blood

`It's a fear that plays on all of us'
Toronto Star, Feb. 18, 2006.


Shelley Kubin keeps a bullet in her jewellery box.

It will never be fired.

The bullet was part of a pact she had made with her father Ed Kubin, a Canadian hemophiliac infected with HIV from a tainted blood transfusion.

Weary from the punishing illness, Kubin told his three daughters that, when he was too sick, he was going to take his gun and shoot himself.

His brother, Barry, also a hemophiliac, had already died of AIDS after receiving a transfusion. Ed didn't want to go through prolonged suffering himself.

Shelley agreed to keep the bullet because it meant her father would have to get it from her first before he shot himself, thus ensuring she would get to say a last goodbye.

It was October 1996 and Kubin, an outspoken advocate for tainted-blood victims, was ailing badly. After sorting his affairs, he drove several hours from his home in Lorette, Man., to Nelson B.C. to visit Shelley.

She suspected he had come for the bullet.

"He said: `I don't want to do this any more. I'm tired.' I just kept putting him off.''

Checking into a nearby hospital with a fever and suspected pneumonia, he died days later in intensive care on Oct. 22.

She wasn't at her father's bedside because she had gone home to rest, not realizing he would never walk out of that hospital.

Now when Kenny Roger's song "The Gambler" comes on the radio, Shelley calls sister Shannon to reminisce about dad.

"That was one of his favourite songs. My sister Stacey played it at her wedding a couple years ago,'' Shelley recalls fondly.

But when the anniversary of her father's death comes around Shelley, who now lives in Winnipeg and works at a pharmacy, doesn't do anything special in his honour.

"I've removed myself from the issue. I had to let it go,'' says the 28-year-old.

That's only partly true.

She has three children, one of whom, her son Shayde, 4, has hemophilia. Because Ed was a hemophiliac, it means Shelley is a carrier. Male children she has have a 50-50 chance of being hemophiliacs. Her other son Shylo, 5, isn't a hemophiliac.

Every Wednesday, Shelley takes Shayde to Winnipeg's children's hospital for preventive treatment, and if he gets a bleed, which isn't often, he goes on other days.

So the safety of Canada's blood system will always be a major concern for her.

"I ask myself: Is our blood system safe? It's a fear that plays on all of us. It's something I don't think I'll ever feel comfortable with."

Shelley believes her father would be angered by news this week that individuals charged in the tainted blood scandal, like former Red Cross chief Dr. Roger Perrault, could see charges dropped.

"I think that's crap.

"The one thing my father wanted was accountability. He knew people in France went to jail and he wanted to see that happen here."