Why Mark Lee Is Hopeful About Finding A Cure For His 5-Year-Old Daughter's Rare Kidney Disease

8 DAYS: Make It Big Big, which stars you and the rest of your Love 97.2FM morning show co-hosts Dennis Chew, Marcus Chin and Chen Biyu, delves into the secret lives of radio presenters. Which part of being famous bugs you the most?
Mark Lee: [As a celebrity], I hate it the most when I’m having my meals and people sneak photos of me without my permission. There was once I was having lunch in a restaurant with my PA, and someone stealthily took a picture of me. I went over to confront him, but he denied taking a picture. So I asked to see his photo gallery and forced him to delete the pics. He didn’t want to at first, but I told him, “Can you please respect me? I’m having my lunch. Imagine if you’re eating now and I take a picture of you with your mouth wide open, would you like that?” Eventually he deleted it. I just want people to learn how to respect others. I never reject people when they ask to have pictures taken with me. In fact, I always welcome them. They just have to ask nicely.

Juggling the movie and your family at the same time must be really tough. How do you cope?
When I am not working, I try to spend as much time with my family as possible. Even if I only have a two-hour break in between filming, I would use that time to go pick my kids up from school. I also reject invitations to hang out after work so that I can go home and see them. I personally try my best to get my work done between Tuesday and Sunday so that I can have a full Monday to hang out with my family. Mondays are good days 'cos it’s less crowded and we won’t get recognised by that many people.
 

Did your daughter's recent illness have anything to do with you wanting to devote more time to your family?
Well, not really. As it is, I already have very little time with my family. You see, I spend ten hours a day filming. I even have to look at the same [production crew] while I eat! (Laughs) Of course it’s not because I don’t like the people I work with. I would just like to have more time with the people I love.

How is Calynn now by the way?
Okay, good news! After three months of treatment, her red blood cell count is back to normal! However, the bad bacteria is still present. She doesn’t need to go to the hospital anymore but she still has to take her medicine at home. We are still not sure how long she’ll be on medication for. Maybe five years, 10 years, nobody knows.

Is there any chance for a full recovery?
It depends on how fast her body works to get rid of the bad bacteria naturally. Or until she develops the immunity to fight the bacteria.

What was your reaction when you first heard about Calynn’s condition?
Of course I was shocked, and felt really bad for her because she is so young. My wife broke down, but I told [my wife] that there’s no point crying over something that has already happened. Right now, the most important thing is to cure Calynn, no matter the cost.

So how much have you spent on all the medical treatments so far?
Thankfully, we have insurance to cover everything. But one treatment costs more than $1,000, and we’ve spent at least $10,000 so far.

How is Calynn reacting to the treatment?
Luckily, she is still as active as ever and isn't prone to any of the side effects. She’s growing taller and has put on weight, which is a miracle. She’s only five, but she understands how much difficulty we are going through because of her illness. She tried so hard not cry, especially when the doctors inserted a needle in her. You could see tears welling up in her eyes, but she wanted to stay brave for us.

Are there any dietary restrictions or things she can't do now that she could last time?
We were advised not to give her food that is too sweet or salty, because it affects the kidney. But whenever she wants to eat, say, ice cream, we would just give her one or two spoons and that’s it. We would finish the rest. Who knows, we might just be the ones getting diabetes after this. (Laughs) Whatever she wants to eat, we will try our best to give it to her. At the end of the day, she still leads a normal life, and there’s nothing she can’t do now that she did last time.

Have you done anything special as a family for Calynn after her diagnosis?
Oh yes, definitely. My wife brought her on a trip to Taiwan, which I couldn’t go due to work. I told my wife to just bring her overseas before her first treatment, because we wouldn’t know if she… (pauses) would make it after that.

In what way has Calynn changed after her diagnosis?
Because she constantly sees us shuttling between our home and the hospital, she realises that it’s pretty taxing on us, so she tries to lighten our burden. She would fold her own clothes and set it aside neatly after showering, and would take the initiative to get her towels and things like that without our help. We observed a lot of difference in her behaviour, especially during our recent overseas trip. Before she was diagnosed, she would always anger us without fail on every trip, because she always wants to be carried. Now, she would ask us not to carry her after a while so she can walk on her own. And when it came to meals, she would quietly sit down and eat by herself. Previously, making her eat was like wanting her life! (Laughs) She’s also very cooperative when it comes to taking her medication, because she knows that it would help her get well. I am honestly very touched by how matured she has become.

What is the most difficult thing you’ve experienced during this period?
Wah, the most troublesome thing is that she wants to sleep with me everyday! Sometimes, after a long day’s work, I would like to have some quiet time alone, to do my own things, relax and have a coffee. But she comes to me and says, “Papa, I give you five minutes, come and sleep!” I would have to cuddle up in bed with her, and hold her as she sleeps, just like my girlfriend! (Laughs) I would only leave the room when she’s asleep. (Laughs)

But on a serious note, one of the most nerve-racking moments we’ve had was when the doctors needed to conduct an ultrasound scan on her kidney. They had to use a huge needle to extract a part of her kidney to test if the disease was a fast or slow spreading one. If it were to spread fast, her kidneys would’ve been destroyed in six months. Thankfully, it's slow, so we still have about five to ten years to find a solution.

How did you break the news of Calynn's illness to your other kids?
Oh, we just said that your sister’s not feeling well, and that she has to undergo treatment at the hospital. I told them that they should all give way to their mei mei, and they understood.

Is Calynn aware of how serious her situation is?
No, we just told her she was sick. Even if we were to describe it to her, she wouldn’t understand it either.

What prompted your wife to set up the Facebook page, Cheers for Calynn, and how has the response been?
Because my daughter’s kidney disease is so rare, my wife decided to set up a page to see if there is anyone facing the same problems as us. The response has been very good, with other parents coming together to support each other and giving tips on how to get through this difficult time.

We heard that there was a scam going around trying to raise money for your daughter. How do you feel about that?
Oh, that rubbish ah. I see already also very angry. I think… (pauses) Are you even human to use a picture of a suffering kid just to cheat donation money out of people? Even if it’s not my kid — that’s still a disgusting thing to do. We wanted to make a police report, but the page is gone now.

Make It Big Big opens in cinemas on Jan 3.