At 19, Kourtney faces the reality that each day might be her last with courage, wanting others to know what a wonderful gift life is. This is the message she asked us to help her share…
For most teens the world is an open book, but for a young Penticton woman, now is the final chapter in her life.
“Anger, pain and fear” are the emotions Kourtney Saviskoff, 19, struggles with daily as the clock continues to tick away the precious minutes she has left.
Born with PFIC2, Byler’s Syndrome, Saviskoff underwent two transplant surgeries in one week at age nine and has been in rejection for nine of the last 10 years.
Yet still, against all odds and doctors’ predictions, Kourtney continues to wake up each morning. She now desperately wants others to understand what a wonderful gift life is, in any form.
“It’s really hard, but I try to go day by day, I really don’t know how long I have left, I guess it’s just whenever my body decides it can no longer be in this world,” said Kourtney, who is staying at
Moog and Friends Hospice House. “Not a lot of people appreciate what they have, they take it for granted and they should be happy with what they have even if it’s not a lot.
“I’m happy even if it’s just a little bit, a few more days.”
According to her mother Kora, doctors said Kourtney would not make it to two years and then not past age eight. As recently as May, it was believed she only had days left.
“I don’t know, what can I say, she’s just a fighter and I’ve been dealing with it her whole life, so I just deal with it,” said Kora. “Right now we just take it one day at a time, I cry everyday, but we just have to go one day at a time.”
The two see each other as often as possible, just enjoying the brief time they have left.
“When I stay the night with her we talk about things that she wanted to do, she wanted to go to college, she wanted to become a photographer, these are things that she wanted to do but she won’t be able to anymore,” said Kora. “She just wanted to be normal like everybody else but she can’t.”
Kora, who has two other healthy sons, added the most difficult thing is seeing her daughter in such pain and not being able help.
“Kourtney sometimes says she wishes she had ‘never been born and why am I like this?’ I just can’t answer that,” she said.
Mother and daughter have talked about doctor-assisted death since the procedure became legal last June.
“I’d rather go when my liver goes rather than have a doctor do it, it doesn’t seem natural to me,” said Kourtney. “I’ve seen a couple of people go from that and it doesn’t seem right.
“Death scares me a lot, it would scare anybody, I’m not afraid to go, it’s just not knowing.”
In spite of her own condition, Kourtney worries about what will happen to her mother when she “goes to heaven.”
“I’d really like to raise some money to help pay for my memorial because mom has worked so hard all my life and suffered so much herself just to look after all my medical needs, I just really want to do that for her,” said Kourtney, who now weighs only 60 pounds.
For those who can help a campaign has been set up at gofundme.com/loveforKourtney.
Although she is now confined to her room, when she was able Kourtney enjoyed sitting outside in the sunshine, shopping with mom or on a date with her boyfriend Joey Krick of Salmon Arm who catches a Greyhound each weekend to be at her side.
“Having Joey come up here just means so much to me, he’s seen how bad things can get for me, he’s had to pick me off the floor,” said Kourtney. “But sometimes we go out, the other day we went to see a movie, Sausage Party, it was gross, you’ll never look at food the same way.”
For Joey, who is at Kourtney’s side this week as her condition continues to deteriorate, travelling back and forth is not the difficult part.
“Having to leave her to go home is very hard, she is such a wonderful person,” he said, looking across the room at his girlfriend smiling back at him from her bed.
Sadly, and something that still brings her to tears to her eyes, is the way people have treated her because of her physical appearance.
“I have had people laugh at me because I’m different,” she said. “I try to ignore it but it still hurts a lot. I want to tell people everyone should be kind to those who are different because you may not know their story.
“What makes me happy is when people tell me I inspire them — it makes me feel like there’s a bigger part of me and that I could be doing so much more than just waiting for my liver to fail.”
As this chapter in daughter’s life closes, Kora said: “Kourtney yearns for the peace it will bring being reunited with her baby boy who passed away three years ago.”
And for Kourtney: “When it comes time to go, I want people to remember me for the good things, for the happy times. I want people to look at the beautiful things, the sunrise in the morning, the forest and lakes and think of me.”
