health

10yo Sophie saved and changed the lives of several people. But they'll never know her name.

It’s not surprising that friends Kate Clark and Karina Bombski met at the gym. The Queensland women have the kind of approach to their health that most of us only manage as part of short-lived New Year’s resolution.

But to them, exercise isn’t about weight loss or sculpting or firming up.

For Karina, who lost her 10-year-old daughter in a tragic accident, marathons are a way of focusing the mind, moving forward, one step at a time. For Kate, who spent her entire adolescence battling a crippling liver disease, obstacle course races are a celebration of what her body can do since she received a transplant two decades ago.

By keeping healthy and exploring her potential, Kate, 38, hopes to be an example to her friend, a person who, like her own anonymous donor’s family, made a selfless decision to donate a loved one’s organs. Karina’s little girl, Sophie, ended up saving and changing several lives.

“I hope that Karina can see how I live my life and the gratitude that I have shown, and that she knows that there’s somebody else out there that will have the same respect and gratitude towards Sophie,” Kate said. “It’s important that she feels she made the right decision to donate, because she’s given people like me the opportunity to live their best life.”

In 2018, 1,782 lives were transformed by 554 deceased and 238 living organ donors and their families. But there are still more than 1,400 people on the transplant wait list.

Kate knows that limbo all too well.

Kate’s story

Image: Supplied.

Kate was eight when she diagnosed with cirrhosis of the liver.

She'd watched as her brother, three years older, had suffered the same condition. In fact, her disease was only detected when she underwent a blood test for chickenpox, which had swept through his hospital ward. (In adulthood, testing on her father, who suffered liver function issues, would reveal it to be the result of a rare genetic condition called Progressive familial intrahepatic cholestasis type 3.)

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"I was annoyed because I didn't feel sick, I didn't look sick. I was into sport, running around, having fun with my friends, and then all of a sudden I'm thrown into blood tests every couple of weeks, liver biopsies, other tests," she said.

"Hindsight's a wonderful thing, because now I go, well, if it hadn't been for that discovery, I probably wouldn't be here today. But as an eight-year-old I was just annoyed by the fact that my life as I knew it was turned upside down."

That's when she took up running, as a sort of coping mechanism for the anger. To this day, it's what she does to clear her head.

Kate was placed on the transplant list immediately, and she began the same wait her brother had endured before her.

"He had five amazing years after the transplant," she said. "But at 15 he had a heart attack that killed him; his body just had enough."

"I probably had less than a week to live."

As well as dealing with her grief, Kate battled through the symptoms of her condition throughout her teenage years. Jaundice. Lethargy. Confusion.

She could barely stay awake in class. She watched as her friends would go out and party, while she struggled to get out of bed.

The disease meant she had to quit her beloved athletics at 16, as a state and national champion. And then had to drop out of school in Year 11.

Yet as she crept farther up the transplant list, she was still in two minds if she'd accept a new liver.

"Because of having to watch my brother suffer through what he did and then pass away, I kind of thought, 'you know what, I'm going to enjoy the short time that I have'," she said. "And something flipped a switch. Not sure what it was to this day."

She joined a gym, and started re-building her fitness in anticipation of making herself as strong as possible for what was to come. But the time she got the call, at age 17, she was ready: "I was like, 'I'm doing this. I can fight. I know I've got this in me and I'll just I'll do whatever I can to get off the operating table'."

Kate was in theatre for 21 hours as the surgeons battled against multiple complications. About a quarter of the way in, her mother was told to expect the worst. But she pulled through.

"Without the operation, I probably had less than a week to live, according to the surgeon," she said. "That was one of the first things they said to me when I woke up."

After the transplant, the improvement was fast. Her yellowed skin returned to a healthy colour, her eyes were white and clear. After three months' recovery (again with a few complications), she returned home with an energy she hadn't known for years. Her mind was clearer, her thoughts ordered.

"I would sit down and watch a quiz show and, it sounds silly, but I'd know the answers to the questions. And I'd get excited about the fact that I got it right, you know?" she said.

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"That, and just being able to look in the mirror pull down my eyelids just to see that there's not any yellow there at all. It's probably the little things like that I noticed, more than the big things."

The enormity of the gift she's been given is never far from her mind.

"Every day I wake up and it's a brand-new day for me. But that's been taken away from another family. They didn't get to have those sunrises and sunsets with their loved one," she said. "So straight after surgery I made a decision to do everything that I can to be the best, healthiest version of me that I can. Not just for me, but for the donor and the donor family."

Kate competing. Image: Supplied.

Karina's Story

Karina doesn't use the word funeral when talking about her daughter Sophie's service. "A celebration," she said. "A party."

"We had party food with rainbows and lots of unicorns, and she had a white casket with big rainbow stickers and unicorns. All her friends and family signed it and wrote notes to her, and we read stories. I read out her favourite story and also read out a poem. We talked about funny things that she used to do... There was lots of laughing."

After all, 10-year-old Sophie was a fun-loving kid. Funny, loveable, courageous, her mother said. "She'd give anything a go. She did ballet, horse riding, hockey, swimming, and anything in between. And I think that it was a good way for her to live; she'd try everything she wanted to try. Yes, just happy, go-lucky girl."

Sophie also had epilepsy. She'd been diagnosed at age three, following a massive seizure at home. Her epilepsy plagued her early childhood, but had eased off around age eight.

She'd been two years seizure-free, when in 2016, she had one while playing in her family's backyard pool. She was floating on an inflatable unicorn, but slipped into the water and drowned.

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"After Sophie passed away, we came back to the house, which was extremely hard. It took me quite a while to get out of the car, because we're coming back to our home without our daughter," Karina said. "It was hard, but I went into her room, and on her whiteboard - she liked to play teachers all the time - in rainbow-coloured writing, it said,  'Live life peacefully'. I had never noticed it before. She must have written it just the day of her accident."

Sophie's message. Image: Supplied.

Those words are now tattooed across Karina's back in memory of her little girl.

Her room, whiteboard and all remains untouched: "I go in every day and open her window in the morning and close it at night. It doesn't get easier, because now there's dust settling. That's hard because it's a reminder she hasn't been in there."

But together, as a family, they are working through their grief. They celebrate Sophie's birthday with cake and balloons, and Karina and her other daughter, Hannah, plan to make a blanket out of Sophie's clothes to comfort them.

Not that Sophie's ever far. After her death, Karina turned to running as way of channelling her grief and setting an example to her other daughter, Hannah. And each kilometre she runs, she said she feels Sophie urging her on.

"She's always in the back of my mind, like when I was running 50km the other weekend, she was like, 'Come on, Mum, you know you can do it. Keep going!'" Karina said. "That's why I push myself. For my own mental health, and to show Hannah that, yes, we all fall down in the hole, but we can't stay there. We need to pick ourselves up.

"And I'm lucky to have had Sophie for 10 years, and the experiences and the laughs and the joy that she brought to my life. So I guess I'm embracing all that."

The Bombski family, with Sophie front and centre. Image: Supplied.
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Karina also finds a sense of comfort in knowing Sophie has helped other families, courtesy of her and Sophie's father's decision to donate her organs.

"We decided that if we were in a situation and we were waiting for organs that would be horrendous," Karina said, "So for her to be able to do something for someone else... we didn't hesitate.

"I think if she had to make a decision she would make the same one, because of her personality. She was so compassionate, loving. She wouldn't want to see someone suffering."

In keeping with Australian law, Karina doesn't know who the recipients are, but she's been told by DonateLife that they're doing well.

"That's all I need to know," she said. "It gives me a sense of relief, because Sophie can live through someone else."

Register to donate.

Kate: "I say to people, 'If you were in a situation where your mum, dad, son, daughter, uncle or aunt needed a transplant, would you be willing to accept an organ? Ten times out of ten, the answer is yes, because they'd do anything to save their life... So then in saying yes, you should be saying yes and registering to donate, because it potentially could give a family like yours the opportunity to save their mother, father, son, daughter, uncle or aunt."

Karina: "Families need to have the discussion about organ donation. Yes, we're all going to have difficult conversations in our lives, but start the conversation - just have it. Then it's all on the table and everyone knows.

"Obviously in our situation there was nothing we could have done or anyone could do to save Sophie. So if it can help someone else. Why wouldn't you do it?"

This DonateLife Week (Sunday 28 July – Sunday 4 August), registered donors are encouraged to get at least one other person to sign up in an effort to double the national register!

For more information about organ and tissue donation, including how to register as a donor, visit donatelife.gov.au – it’s quick and easy, takes less than a minute and could end up saving lives.

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