Ken and Rita Wolfe of Saskatoon know first hand the pain and joy of parenting terminally ill children. Erin, age 14 years, Kathleen, age 10 years, and eight-year-old Aidan know the sorrow of losing two sisters to a disease known as Niemann-Pick-Type C (NPC).

NPC is a rare autosomal recessive disease, an illness in which both parents are unsuspecting carriers of one copy of the abnormal gene that causes the condition. NPC can strike at any age, causing progressive deterioration of the nervous system. At the time Megan and Shivawn Wolfe were ill, they were two of only eight cases in Canada.

Both girls were about eight years old when diagnosed; neither of them was expected to live past the age of 15.

Megan passed away in March 1997, two days after her 15th birthday. Shivawn was 15 this past January; she died in April.

Rita spoke of the “sense of unreality” that overwhelmed them. She also told of their determination to “just concentrate on getting on with life.” There was no question but that Megan and Shivawn would be surrounded with love.

While Rita and her family drew upon divine strength and the outpouring of practical help from others, a far different drama was being played out in a courtroom in North Battleford, 90 minutes northwest of Saskatoon.

Rita tells of how she felt compelled to attend one session of the trial in which Robert Latimer was accused of the murder of his daughter, Tracy.

“I think what brought me to the courtroom was the announcement from the media, which at the time I thought must be false, that everyone supported the idea that murdering this child was a good thing. That … was a burden for my family to hear. The fact that someone would have been driven to that point is something I can never explain – but that people would jump up and support the murder of an innocent vulnerable child was what I was personally saddened and angry about. I wanted to understand what would drive Mr. Latimer to make the decision he made.”

“I needed some information for myself – how bad would a child have to be for a parent to have those kinds of thoughts?”

Upon arrival at the courthouse, they were met with immediate discrimination. After carrying Shivawn up the outside stairs of the building, a security guard informed them that the trial was on the third floor and that no elevator was available. It was only after a struggle up three more flights of steps that they were told of the existence of an elevator by a second guard.

Although Rita didn’t know what to expect that day, it turned out to a well-chosen time.

“It was the mother’s day of testimony and she talked extensively about Tracy’s needs and Tracy’s condition and care,” Rita said.

Although Mrs. Latimer emphasized the most negative aspects of their situation, excerpts read from her journal showed an ongoing balance between difficulties and good times. There were references to Tracy’s “smiles, her happiness, her comfort and types of food she enjoyed.”

“It gave you a much fuller perspective of a human being,” Rita said.

That day at court, along with published reports of Tracy’s condition, convinced Rita that they had already overcome some of the conditions the Latimers felt were intolerable.

“One person commented to me that when we walked into the courtroom the entire atmosphere changed. I think the parallels between Tracy and Shivawn were so close that it was very unsettling for people to deal with Shivawn’s presence there and talk about it being all right to kill such a child.”

Mr. Latimer also affected Shivawn, Rita explained.

“The morning that we climbed all those stairs to the courtroom, what I didn’t expect was that the very first face Shivawn would see would be Mr. Latimer’s. She immediately began to cry really hard. The amazing thing about that was that we hadn’t heard a vocalized cry from her in about a year and a half. She actually regained the ability to make distress noises since that day, so we did gain a bit of a blessing. She began to cry very hard when she saw him, so it touched something.”

Leaving the courtroom at the end of the session, Rita met up with the Latimers. “Mr. Latimer walked right by us in the lobby and made eye contact with me. He looked at Shivawn. I wanted him to know I had, and still have, no personal bad feelings toward him at all.”

The reaction of the media was not so kind, implying that Shivawn’s presence was an indication of Rita’s lack of care and sensitivity.

“While I knew that criticism was possible,” she said, “I had hoped for years that the media would cover others who could give a statement of defence for these children.”

“It was easier to blame me and say that maybe we shouldn’t be here. That was another disclosure of our discriminatory feelings, that a very sick person should be kept shut up at home. We have taken Shivawn to as many activities as she could handle. She expressed the desire to be there – she had the right to be there.”

Grief over the deaths of Megan and Shivawn have been tempered with the knowledge and assurance that everything possible had been done for their children.

“Love inspires you to find some answers and comfort … and we really were secure in our care for Shivawn … I was able to come away with the confidence that their particular temptation would not be ours, because we had already met the challenges that had stopped them (the Latimers).”

“Shivawn never had a bedsore, we always took great care to prevent it. I don’t want to be presumptuous, but we were always taught that was a very important measure of care. It’s a very preventable situation. Where was that source of pain …was it preventable? That was another thing we didn’t have to worry about for our child. We moved on to whatever pain treatment was necessary to bring her comfort and we used a feeding tube, because of course you’re in terrible pain if you’re hungry.”

“We cannot accept that taking another person’s life is an act of love,” Rita said. Megan and Shivawn Wolfe were “loved to their last breath, their last heartbeat.”

It was a love that allowed them to live until the day they died.