Posted on Mar 04, 2019
Mikayla's Story with Cystic Fibrosis
Mikayla Bianchin wouldn’t trade the life she has now for a “normal” life. Being diagnosed with cystic fibrosis at birth, the most common fatal genetic disease affecting children and young adults, doesn’t stop her from appreciating the beauty that surrounds her.
Mikayla Bianchin wouldn’t trade the life she has now for a “normal” life. Being diagnosed with cystic fibrosis at birth, the most common fatal genetic disease affecting children and young adults, doesn’t stop her from appreciating the beauty that surrounds her. At 18 years-old, Mikayla’s channeled this appreciation for life into becoming a talented illustrator. In collaboration with the upcoming film Five Feet Apart, starring Cole Sprouse and Haley Lu Richardson, hitting theatres March 15, we’ve created a collection with Mikayla to raise awareness for cystic fibrosis. During the month of March, 50% of the proceeds from this collection will be donated to the Cystic Fibrosis Individualized Therapy program, a research collaboration between Cystic Fibrosis Canada and SickKids Hospital.
In short, cystic fibrosis (commonly known as CF) produces abnormally thick mucus in the body, affecting the digestive system and lungs. This results in a multitude of other issues for the body and its organs, requiring intensive daily treatments.
“I saw a chart one time pointing to all the problem areas CF can affect on the body and I swear there was an arrow and text box coming out of every square inch of the person!,” recalls Mikayla, “CF is a progressive disease so it generally gets worse as you grow older. It’s hard to breathe and at times quite painful. For CF patients to try and keep our bodies healthy, it’s a lot of work.”
She goes onto describe how CF patients are commonly treated: inhalation treatments that can take up to three hours each day, physio sessions, oxygen, feeding tubes, and transplants. Oh, and don’t forget about the roughly 50 pills she has to take daily - ranging from digestive enzymes to vitamins. “There are a lot of visits to the hospital including the CF clinic, pulmonary function tests, x-rays, blood work, MRIs, surgeries, and more. There’s unfortunately currently no cure for cystic fibrosis,” says Mikayla.
Mikayla recalls only truly understanding her diagnosis when she had her first surgery around the age of seven. Growing up, she had her own team for Cystic Fibrosis Canada’s “Walk to Make Cystic Fibrosis History”, a charity initiative that celebrating their 15th anniversary this year. Although the walk is to raise money for CF research and high-quality individualized care, she remembers just thinking it was a fun day trip. Now that she’s older, Mikayla reflects on the ups and downs of her condition.
“A common misconception I’ve come across is that people think there’s nothing wrong because they can’t see it most of the time. Or they think I just have a cold and they can catch it or that it’s something I’ll just get over. It’s hard to go in depth about something so complicated. CF is a serious illness and it is a lifelong battle we must win,” she says.
“I think the most challenging part for me having CF is that it’s so demanding in my everyday life. I can’t go a day without forgetting I have it or pushing it to the back of my mind. ‘Did I do my three hours of inhalation treatment and physiotherapy? Check. Where are my pills? Got ‘em. When do I go to the hospital next? Wednesday. Wait, I need masks!’ Not to mention the constant symptoms I feel throughout the day. The main ones are fatigue and constant coughing,” says Mikayla.
Despite her challenges, Mikayla remains a shining example of positivity. She stays motivated by writing quotes on a wall that she reads when she wakes up every morning. She often says to her family, “What a time to be alive” in a joking tone, but means it. She reminds herself twice a day that even when something bad happens, she’s lucky she’s alive today and grateful to be living it. She declares, “I am excited and I am in no way prepared, but let’s do this thing.”
Mikayla carries an inspiring perspective on life. You can often find her taking photos of her surroundings because she views the world as snapshots of potential paintings or drawings. “It takes real self-control not to walk up to strangers and say, ‘Hello, can I take a photo of your face? It is so interesting, I’d love to draw it, thanks, bye!’” she says.
Most drawn to portraits, she’s intrigued by eyes and the depth found in each pair, while also praising the uniqueness of faces and aspiring to tell each of their stories. She enjoys experimenting with high pigmentation and opacity through the use of colored pencils and oil paints. Growing up in a creative family from Binbrook, Ontario, Mikayla was encouraged to explore different mediums while studying landscapes. When she discovered her affinity for portraits, she started drawing those around her and photos of celebrities as her models. Now she is attending Sheridan College for illustration and is thriving in an environment with students and professors that can help her hone her skills.
However, interaction with others is not always an easy task living with cystic fibrosis. Mikayla describes it as an isolating disease because individuals with CF cannot be within six feet of each other in order to prevent cross infection. While this does not necessarily affect Mikayla’s college life, it does affect her life at home. Mikayla’s younger sister, Madison, is also fighting cystic fibrosis.
“I have a memory of my younger sister finding out that CF was a fatal illness. She had no idea and I think that was heartbreaking to watch her find out that we could one day die from it,” she says.
Growing up and being exposed to the same environment made living closely with another individual with CF easier, but attending college exposed Mikayla to new bacteria in her lungs, forcing her to take precautions around her sister when she visits home. Despite this, Mikayla and Madison battling CF together has brought them closer.
“Going to CF clinics together was hilarious. We’d just make it the best time we could and bring games and coloring… maybe this is where my art passion started,” says Mikayla, “We even created dance routines. I wouldn’t doubt we annoyed all the nurses and doctors from the time we walked through the doors to the time we left! Madison and I can do treatments together and take our pills at the same time and be with each other through surgery recoveries. CF is a hard topic to discuss with people who don’t have it because they will never fully know what you’re feeling. Though I wish we didn’t have to deal with CF’s complications, it is comforting to have each other and I couldn’t ask for a better person to be on this journey with.”
Mikayla’s first permanent tattoo was an ode to her sister. Designing it herself, it’s a stem with two roses on her left rib. One rose for her, and the other for Madison. It represents their battle against CF and the story of “65 Roses”. Mikayla views tattoo as a beautiful form of expression and plans on getting more tattoos in the future, mirroring inkbox’s belief that “your body is a canvas”. She might also convince Madison to get a matching one! Hey Madison, how about trying inkbox first?
We’re so honored to have partnered with Mikayla on our Five Feet Apart collection. The bond she shares with her sister is a perfect example of the symbolism of being “five feet apart”, finding ways to connect with a loved one despite the physical barrier. Finding happiness when people appreciate her art, she wants others to also feel proud when wearing the designs that come from the heart and her experience of being on this journey.
After learning about the collection and watching Five Feet Apart, Mikayla wants people to take away the difficulties of living with cystic fibrosis. “Most of the time it is not fun. It’s exhausting and hard, but none of us with CF would be the people we are without it. No, we aren’t our disease, but I believe there is something to be said about how strong people are from battling the things that they’ve gone through. The experiences we have in life are what molds us into the humans we are, and because of this we’re ever-changing and making our lives into living, breathing art.”
Mikayla’s strength is admirable. As an advocate for ending CF, she firmly states that she does not want to be pitied for having a terminal illness, but instead, wants to be taken seriously. She represents one of our core values of “being better than yesterday” in her determination live her life to its fullest, despite her diagnosis.
“I just have some obstacles, as many other people do, and I have a great appreciation for the people who have helped me through these obstacles that CF brings. I am immersing myself in things that currently fascinate me in the moment and that makes me happy because that is what I can control. I feel confident that CF does not define me, but it has given me strength and benefited my outlook on life tremendously. I will fight this thing until my last breath!”
Check out Mikayla’s designs and our full collection with Five Feet Apart. 50% of the proceeds from this collection from the month of March will be donated to the Cystic Fibrosis Individualized Therapy program, a research collaboration between Cystic Fibrosis Canada and SickKids Hospital.
Five Feet Apart, starring Cole Sprouse and Haley Lu Richardson, opens in theatres March 15th. Follow Mikayla’s journey and continue to be inspired at @mikaylaartmikayla
