Chris and his brother, Nick
Chris and Nick Fare have always shared a special bond. Growing up with muscular dystrophy (MD), they experienced challenges together that most brothers don’t have to go through. Challenges that Chris said only made them tougher and brought them closer.
When Chris was six and Nick was nine, they were diagnosed with limb-girdle muscular dystrophy. A disease that is progressive and affects mostly the hip, shoulder and back muscles. Nick’s disease advanced faster, making his mobility more limited.
“Seeing what my brother had to go through first, and how well he handled it, had a profound impact on how I wanted to live with MD,” Chris shared.
Growing up with a disability and watching his brother progress gave Chris a sense of compassion and need to help others. Because Nick was weaker, Chris often felt he had to be the protector. A role most younger brothers don’t have to play.
In 2009, they launched a clothing brand to help raise awareness and give back to people with disabilities. Only weeks after they started the company, their father, Randy, had a stroke. He faced a long recovery, but is doing much better and like his sons, has fought through a lot of adversity.
“Once the business really started going, we made donations to the Muscular Dystrophy Association and we bought an iPad for a young girl we knew who had cerebral palsy,” Chris explained. “The iPad helped give her a voice so she could talk to family on the phone.”
Heart issues diagnosed at Aurora St. Luke’s
Chris has had heart issues related to his condition since the age of 19, but doctors at other hospital systems couldn’t figure out the exact problem. In 2009, he was referred to Aurora St. Luke’s Medical Center where tests revealed he had an enlarged heart and would need a transplant. While he waited for the right donor, his heart continued to wear out. So in 2015, doctors installed a left ventricular assist device, or LVAD. It’s a pump that was implanted inside his chest to essentially help his weakened heart to pump blood.
“You have this drive line that goes in through your stomach, and in order to power that, you have a controller and batteries,” Chris explained. He described the “wearable” they give patients to hold all the equipment in place as “clearly created by someone who doesn’t have an LVAD. It was uncomfortable and unsafe.”
So Chris, with his entrepreneurial spirit and passion to help others, went to see a seamstress for help designing a better vest. That very day, however, he had an experience that would only punctuate his frustration.
“I got my drive line cord stuck on a door knob. It pulled me to the floor and I thought it ripped out of my heart. I thought I was going to die,” he confessed. Fortunately for Chris, the cord stayed in place and it further motivated him to keep working on a vest replacement.
New heart, same passion to help others
Chris, his sister, Amy, mother, Dorothy (seated), and father, Randy
In March of 2016, the day finally arrived. Chris’s transplant team at Aurora St. Luke’s had found a heart and Chris had a heart transplant. At that very same time, Chris’s older sister, Amy, was often at Aurora St. Luke’s receiving chemotherapy treatment for cancer. While he was recovering from his transplant, Chris would actually travel across the hospital, in his gown, to support her.
“After all the health issues and everything my family has been through, we just learn to keep pushing through it and focus on the positive,” he shared. “I don’t really get scared about things I can’t control. My brother never did either.”
Today, at the age of 36, Chris often uses a wheelchair to get around but is still quite mobile and his new heart is serving him well. Unfortunately, Chris and his family lost Nick in 2013, when Nick was just 34 years old.
“His heart just got to the point where it couldn’t sustain anymore and he had heart failure,” Chris shared.
It’s hard to describe a loss so deep. Chris’s relationship with Nick made him a better brother, a better human being. Even though he no longer has the LVAD, Chris is still working on perfecting the vest so it can be used by other patients who need it. He promises he won’t stop working to make life better for people with disabilities– people like himself– people like Nick.
“I think about my brother every day. We started this whole process together and I just want to keep his legacy going,” Chris shared. “I want to make him proud.”
Your support of the cardiology programs and services at Aurora St. Luke’s Medical Center means people like Chris have been able to get the critical care and expertise they needed to LIVE WELL. Doctors at Aurora St. Luke’s helped Chris and his family in ways that other hospitalS couldn’t. Not only did it save Chris’s life, but it means people like Chris are able to stay strong and give back to other people, too. If you’re interested in learning how you can support cardiology care at Aurora St. Luke’s, contact Michelle Weber at firstname.lastname@example.org, or CLICK HERE to make a gift.