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Hailey is an accomplished young woman who has always found time in her busy life to make a difference. As the Communications Coordinator for Corporate Citizenship at TD Bank Group, the 25-year-old is building a career in a field that is meaningful and has a positive impact on her community. Hailey lives with cystic fibrosis, a life-threatening genetic disease that requires daily medical treatment and management.
Hailey volunteers with Cystic Fibrosis Canada, fundraising and advocating for people like herself who want to see a future without CF, and supporting those living with chronic illnesses and rare diseases. Her career ambitions and role as an ambassador for CF Canada are admirable. Hailey continues to achieve her goals and lives a fulfilling life, despite her medical condition and the adversities that come her way.
In 2011, Hailey was 17 years old and her wish to meet a music producer was granted by Make-A-Wish® Quebec. We talked to Hailey about what it’s like to live with cystic fibrosis.
A Difficult Diagnosis
“My family knew very early on that I had CF - I was diagnosed at four months old. Cystic fibrosis is the most common fatal genetic disease affecting young Canadians. It mainly affects the lungs and digestive system, but liver disease, diabetes, osteoporosis and other secondary diseases are common as well. With CF, basic tasks can really consume your energy and prevent you from doing things. I was never able to be spontaneous like other kids, I couldn’t even go on a sleepover without planning everything out, taking medicine with me, and coming back early the next day to do more treatments at home.
In elementary school, I kind of just thought my illness was normal. I didn’t really understand, it was just part of my life. My family took care of me, I took a lot of medicine/treatments, and went to the doctor often. As I started to get older and understood more, I began to get frustrated about it and started asking a LOT of questions. I wanted answers, but it was difficult for my family to give me the answers I needed. As a family, we weren't really into talking about my illness and I jumped through hoops to try to hide it from people in high school, college, and a good chunk of university. By the end of university, it became too difficult to hide CF due to frequent hospitalizations and how it impacted my day-to-day existence. I then started to learn the power of sharing my story and here we are today. Since then, I've been engaged in a lot of public speaking and advocacy regarding life with CF.
In the morning when I wake up, I cough a lot – I often cough all night. I actually just cough all day. I take about 57 pills every day, including pancreatic enzymes to help me digest the fat in my meals. I also struggle to gain weight, so I need to eat at least 3 full meals to try to keep my weight constant. I do three breathing treatments before I go to work, and I do two more in the evening. I also try to exercise as much as possible to help clear and strengthen my lungs. Due to my liver transplant, anti-rejection pills every 12 hours are a crucial part of my daily routine.
I plan my life so far in advance because every choice I make is centered around my health and the reality that time is both limited and far too precious to be wasted. It’s a huge burden on CF patients and the people around you to be this focused on being intentional. I live on my own now and I didn’t realize how much my family had helped with before.”
“In 2009, I was told that I needed a liver transplant and around that time a social worker approached us with a pamphlet about Make-A-Wish and said I should apply for a wish. I have always looked at my illness as part of my life and we mistakenly believed that Make-A-Wish was meant for kids with terminal illnesses.
I was skeptical that I would qualify. But I did, and two wish granters came to my house and asked what my top three wishes were. I am very intentional about what I do, and at that time, I wanted to be a singer and songwriter. I knew that the best wish was to meet a music producer. I didn’t just want to meet a celebrity, I wanted to meet someone who had decision making power in the industry. I was that kid who would bring everyone into our townhouse courtyard to hear me sing. Later, I started writing my own music, singing, playing guitar and piano to express myself.
My wish was granted, and I met with a music producer I admired and received some valuable advice from him on my music. I was also gifted a vocal coaching lesson with a coach who has worked with many famous musicians over the years.”
“My wish gave me hope that there are still good people in the world and that people do care. People who helped make the wish possible didn’t have to help me, but they did. It made me feel like I wasn’t just a sick kid and that I was being taken seriously.
Kids with serious illnesses and their families go through rough experiences day-to-day and horrible, traumatic moments at times. I would tell them to accept a wish and stop worrying about whether they deserve it. Just take it and have fun. You definitely earned it and it’s worth it.
We need to think about research and health care, but we also need to consider quality of life. Before your wish is granted, you have a beacon of hope to look forward to. And afterwards, it’s a great reminder of how happy you were and that you can be that happy again.”
My Life Now
“In 2005, I became involved with Cystic Fibrosis Canada and have now helped raise more than $300,000 for the organization. As I got older, I started speaking about CF in university and at events.
I was awarded the TD Scholarship for Community Leadership for university and had work opportunities with TD during summer breaks from school. After graduating, I did an internship in community relations with the bank and then joined the Corporate Citizenship team full time over a year ago.
The struggle with CF gets harder as adult responsibilities kick in and as the disease progresses. You just have to learn your limits when you’re managing the disease. Cystic fibrosis has always been part of my life but despite my adversities, I’ve still managed to make it a very fulfilling life.”