Falesha Johnson is originally from the Bay area, but now calls Seattle, WA home. Growing up, she was also active, dancing and playing softball, but track and field was the sport in which she really shined, leading her to the University of Seattle on a track scholarship. While her 9-5 is as a fundraiser at her alma mater, being the mom of a daughter with special needs has now become her number one priority.
After her college career as a track athlete ended, Falesha always wanted to stay close to youth and coaching. Growing up, Falsha had no women of color coaches and only one woman coach, who didn’t even coach her directly. She always thought about how cool it would have been to have grown up seeing and having more coaches who looked like her. This was one of the motivating factors for Falesha deciding to coach professionally. “I thought to myself how amazing it would have been if I had someone who looked like me growing up as an athlete to impact me in that way.”
Falesha coached high school track and at the collegiate level. While doing this, she realized that being a track coach while balancing a 9-5 wasn’t the best fit for her. She wanted to have the flexibility in her schedule and also be able to work with athletes. “I thought about all the sports that involve running - soccer, football, lacrosse, and realized that a lot of these athletes didn’t have running coaching. I could come into these sports and help these athletes run better, which would make them better athletes.” It turned into a business, Felite Performance, which primarily works with athletes on running mechanics, how to have coordination and footwork, and how these things translate into their actual sports.
But, Falesha’s biggest role now is being a mom to her amazing daughter, Cali, who was born with a condition called Pfeiffer Syndrome, a rare genetic disorder characterized by the premature fusion of certain skull bones which prevents normal growth and affects the shape of the head and the face. It can also affect bones in the hands and feet. Cali was only diagnosed a few weeks before she was born, taking Falesha and her husband by surprise. After her birth, Cali’s medical needs required her to be in the hospital for 5.5 months after birth, which also coincided with the beginning of COVID. As a result, Falesha and husband had to take turns visiting their daughter and being present for surgeries and other procedures. It was mentally draining, but the medical staff made it as comfortable as possible for them, often zooming with them so they could see what was happening at the hospital.
When Falesha initially got the diagnosis, she went through her own grieving process, wondering, “why me?”, and she questioned if she was strong enough to handle this. But after a couple of weeks, she knew that she was going to fight hard for her daughter and do everything she could to ensure her daughter had the best future possible. And ironically, her background in track and field has helped with Cali’s development. After one of Cali’s first physical therapy appointments, many of the stretches that would help Cali were stretches that Falesha was familiar with due to her coaching background. This was one of the many instances that helped Falesha realize she could in fact do this. “It was like I was hand picked to be Cali’s mom. I was meant to do this. There are skills that I have that are going to allow her to thrive.”
Speaking of her daughter, Falesha says, “she’s such a fighter and she’s so inspiring to me and my husband. Her journey has opened our eyes to the healthcare industry, accessibility, and those with disabilities. We are constantly thinking about her future and that has become a priority over my speed and agility business.”
Although Falesha never set out to be an advocate for children with Pfeiffer Syndrome, there is no doubt that she is paving the way for other parents of children with Pfeiffers. At first, Falesha wasn’t sure how much of the journey she wanted to post online. However, the more she thought about it, the more she felt it was the right thing to do. “I always want my daughter to know I’m proud of her. If my daughter didn’t have Pfeiffer Syndrome or special medical needs, I would be posting about her so I decided to treat the situation the same.” As they began posting pictures of their daughter online, they started getting lots of questions. As a result, Falesha started posting educational information and resources as well, starting both a YouTube page and a blog. More and more parents with Pfeiffer Syndrome began reaching out and telling them how encouraging it was to read and watch Cali’s journey.
Managing her job and her full-time role as a mom to a daughter with special needs requires a lot of balance. Falesha and her partner consider themselves a team and they operate as such, stepping up when the other is more busy. Despite all of this, Falesha really works to focus on making sure that she takes care of herself as well. That means intentionally making time for activities that restore her rather than drain her such as getting adequate sleep, taking mid-day walks, reading books and exercising. Prioritizing her own self-care enables her to be a great mom and advocate for Cal.
Speaking of why she wants to continue spreading awareness about Pfeiffer Syndrome, Falesha says, “I want to normalize Pfeiffer Syndrome. If more parents and children become aware of Pfeiffer, hopefully when Cali gets older, she won’t be met with so much resistance and pointing and staring. I just want to make the world an easier place for Cali and other children with Pfeiffer Syndrome.”
Written by Chrissy King