Meet Emily Chan, our role model in the next BLOOM magazine. Emily, 16, has a rare neuromuscular condition that creates general weakness and breathing problems. She uses a ventilator and a power wheelchair. Here's a sneak peek at part of our interview.
At six months, when Emily was in an acute-care hospital, her parents were asked if they wanted to stop her medical treatment.
“They told me I have a choice,” says mother Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”
Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. She now uses her ventilator mostly at night. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.
BLOOM: How do you define quality of life?
Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.
BLOOM: What is your life like now?
Emily Chan: I have a great life. I have everything – family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school – an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies – all the typical teenager stuff. I love Harry Potter.
BLOOM: What about reading. Do you like those teen romances?
Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.
BLOOM: What are your dreams for the future?
Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari – don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.
BLOOM: How do you view disability?
Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me was that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage – like running over people you hate!
BLOOM: What advice would you give parents?
Emily Chan: Don’t give up on your kid – no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.
BLOOM: Is your condition usually progressive?
Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.