Most special needs parents know what it’s like to spend a lot of time at therapy appointments. We listen and learn as much as we can and we read everything we can get our hands on that may be relevant to our child’s condition. About 10 years ago, when our daughter Sayers was still a toddler, I remember reading a passage posted on the bulletin board at our pediatric physical therapist’s office where we spent many of our Thursday afternoons. It was titled “Welcome to Holland” and it was about the experience of raising a child with a disability. It likened the process of preparing for a baby to planning a trip, and how planning for Italy but landing in Holland was not necessarily a bad thing, just an unexpected change in plan. Kind of like expecting and planning for a typical child and then receiving a child with special needs: an unexpected journey, but no less beautiful and full of wonder.

Sayers was our second child and preparing for her arrival was pretty great. Our oldest daughter, Harrison—a sweet, vivacious, creative and joyful child—was almost two at the time and she was beyond excited to have a younger sibling on the way. Just as we had with our first pregnancy, we delayed the baby’s gender reveal until delivery day, which only added to the anticipation for everyone. When my due date arrived with no labor in sight, we proceeded with induction. Everything went smoothly throughout the day until early evening. When it came time to push, the baby suddenly showed signs of severe distress, as did I, so we were rushed to the operating room for an emergent c-section delivery. Unexpected, catastrophic complications of complete uterine rupture and placental abruption resulted in oxygen deprivation for the baby for an undetermined period of time. In a matter of minutes, both the baby and I found ourselves in serious danger.

I awoke from anesthesia to an empty operating room, save for one staff member who told me that they were still working on our daughter in the special care nursery. I learned that she had been lifeless at delivery, requiring significant resuscitation efforts, and that they were getting her stabilized enough to meet me before transporting her to the children’s hospital NICU across town. I was in shock and held back tears. Once I was back in my room, they wheeled her in. She was in an incubator with a breathing tube down her throat. Her eyes were closed and she looked so little, tired and weak. I put my hand on the incubator window, spoke to her and said her name, “Hi Sayers …” She immediately opened her eyes—for the first time, I was told—looked at me and reached for her breathing tube. That was our first glimpse of Sayers’s resilience. We had a fighter on our hands.

Sayers spent 11 days in the NICU, where they monitored her closely for evidence of brain damage and seizure activity. She was released on July 4th, Independence Day, which felt very symbolic at the time. No one could really tell us what to expect, but everyone hoped that she would do “well.” We immediately enrolled her in early intervention services and she received physical therapy starting at age 3 months, followed by occupational therapy and speech therapy later on. Sayers quickly revealed her nature as a strong, determined, happy, loving and giving child who always had a smile on her face and who delighted in sharing everything, especially if she knew she had something really good. She worked hard at all of her therapy sessions and rarely complained. Given her harrowing start, we were not surprised that Sayers was delayed in reaching the majority of her developmental milestones. We had landed in Holland, not Italy.At age 2, Sayers received her formal diagnosis of cerebral palsy, which was later refined to “ataxic cerebral palsy,” the rarest form of CP. Her condition affected her movement, balance, coordination and speech. She struggled to learn to walk and talk and required a walker to walk safely. For the longest time, my husband carried her almost everywhere. A breakthrough came when, at age 4, Sayers enrolled in her older sister’s school, took one look around, and realized that no one else there used a walker. She looked at me and said, “Mom, I don’t want to use this thing anymore.” For the next several months, we left the walker parked outside her classroom, just in case, but she was determined to walk on her own like the other kids. She fell a lot at first, but she gradually got stronger and never touched that walker again at school. We finally stopped bringing it into school altogether.

Once she figured out walking on her own, Sayers wanted to do EVERYTHING that her friends and sister could do, including soccer, fun runs, tennis, golf, boogie boarding at the beach, martial arts, and even snow skiing. When she required adaptations or accommodations, we figured them out. She loved sports—all sports—but often had trouble keeping up with her friends. Balance and coordination issues continued to affect her participation, and her version of running was fast walking with compensatory body and arm movements to maintain balance. Nonetheless, she pressed onward, always with a smile on her face, and rarely became discouraged. At the time, it took Sayers 17 minutes of painstaking effort to cover a mile on foot. She desperately wanted to move faster and keep pace with her friends.

Despite her challenges, we could tell that Sayers had an athlete’s drive within her. She wanted to move and play and be strong. She wanted to be competitive. When she was seven, Sayers told me that she dreamed of becoming a Paralympic athlete someday.

I took Sayers’s request to heart and began digging on the internet. I investigated Paralympic soccer and Paralympic track and field, but those athletes looked relatively able-bodied and capable of running, compared to Sayers who could not comfortably maintain a runner’s cadence for longer than a few steps and needed more support. Finally, one night, in the wee hours of the morning, I stumbled onto a sport called RaceRunning that was, at the time, in the early stages of consideration as a Paralympic event. RaceRunning involved what looked like a tricycle with no pedals and appeared to have rising popularity in Europe, but almost no presence in the United States. I was intrigued and wondered why it had not yet hit our country.

I discovered that RaceRunning was a Danish invention. Its Danish origins held special meaning for me, the granddaughter of a Danish immigrant. It was a sign. I learned that a RaceRunner is a cross between a trike and a wheelchair, with a seat and a chest plate for stability, handlebars for steering, but no pedals. The RaceRunning frame eliminates the issue of balance and allows the athlete to move at speed, on foot, with support. I read everything I could find about RaceRunning and watched every RaceRunning video available on the internet at the time. I showed it to my husband and we both agreed we needed to find a way for Sayers to try it.

When I reached out to the two RaceRunning manufacturers I could find in Denmark, requesting to purchase a RaceRunning frame for our daughter, one of them turned me down immediately. The other—Connie Hansen, co-inventor of RaceRunning and a former Paralympic wheelchair racer—agreed to work with us. She asked me to send Sayers’s measurements as well as videos of Sayers walking. Based on the information we provided, Connie was able to help us determine which size and style of RaceRunner to order.

It took a few months to arrive, but Sayers’s brand new red RaceRunning frame hit our doorstep in a big brown cardboard box right around the time of her eighth birthday. I assembled it while she was out of town one weekend and we presented it to her to try one warm, sunny Sunday afternoon in July. She was eight years old and, for the first time in her life, finally getting to RUN! Once on the RaceRunner, Sayers took off and barely looked back. She kept looking down at her feet in amazement. It was magical to watch her moving so freely and comfortably.

From that point forward, Sayers was hooked. She loved getting on her RaceRunner to run around our neighborhood and at the track. I asked her how it felt to run and she would respond, “I feel like I’m flying. I feel so free.” It didn’t take her long to realize she had something really special and she was eager to share it with others like her. “I want to start a RaceRunning Club,” she said, so that other people could see and feel how amazing it was. Later that year, we started the club, but Sayers wondered why we couldn’t find more people to participate. We explained to her that RaceRunning frames were very expensive (approximately $2500 each at the time). That is when Sayers recognized that people were going to need help purchasing RaceRunners. She asked us to find a way to spread the word about RaceRunning and help people afford the frames.

In the summer of 2014, when Sayers was nine, we took her to the annual RaceRunners Camp and Cup in Denmark. There, she met dozens of other RaceRunning athletes from around the world. They lived and trained together on the campus of a Danish school for five days and then competed for two days at the end of the camp. I was able to attend the camp with her as her assistant and coach. Sayers was the youngest athlete at camp that year, and the first-ever attendee from the United States. Everyone at the camp was incredibly friendly and supportive and helped us to feel very welcome. The majority of athletes we met there were dependent on wheelchairs and/or walkers for mobility. Sayers was one of few athletes there without an assistive mobility device. It was amazing to see people with various levels of disability all come together to compete in the same sport, and we got to meet some of the fastest RaceRunning athletes in the world, which thrilled Sayers to no end. The smile on each person’s face when they were RaceRunning was priceless. Pure joy all around. Sayers had found her tribe, and, for the first time in her life, she felt FAST. She set four U10 RaceRunning world records at camp in Copenhagen that summer and returned home absolutely elated.

After experiencing the strong sense of community at RaceRunning camp, Sayers felt freshly determined to find a way to build RaceRunning in the USA. “We need to raise money to help people afford RaceRunners,” she said. We told her we would work to find a way. Life got busy, time passed, and Sayers became impatient. At each birthday and Christmas that passed, she asked for nothing except to start the RaceRunning non-profit. We finally got it rolling late in 2016 and presented her with “Watch Me Run, Inc.” on Christmas Day 2016. She was ecstatic. The name was selected to reflect Sayers’s strong desire for others with mobility challenges to finally be able to say, “Hey! Watch me run!” We officially launched in Spring 2017 and the immediate response was heart-warming. So many family and friends and even some strangers supported Sayers’s efforts with donations. Since then, we have been focused on continuing to spread the word about RaceRunning and trying to help as many individuals as we can.

Outside of her philanthropic pursuits, Sayers continues to enjoy training for the annual RaceRunning camp and competition in Denmark. She has had a chance to explore her competitive streak and is constantly working to improve her times. In October 2017, RaceRunning was approved for inclusion as a Paralympic athletic event and Sayers still hopes to compete in the Paralympics someday. Currently, at age 13, she holds four U14, four U12 and four U10 RaceRunning world records. This past summer, she was invited to participate as part of the USA delegation to the CP World Games in Barcelona. She was the only RaceRunning athlete on the USA team. The whole experience was the thrill of a lifetime for her.

When people ask Sayers why she loves RaceRunning, she tells them, “I have a need for speed,” which is true, but, even more importantly, she has discovered an intense need to share the gift of RaceRunning with as many people as she can find who will benefit. Her entry into the RaceRunning world has opened doors to new friendships and communities that we never could have imagined. She has enjoyed traveling internationally to compete, and she dreams of the day when there will be more recreational and competitive RaceRunning opportunities in the United States. She also dreams of the day when anyone who wants to run will be able to do so. Sayers is determined to change the world. And she will.

Sayers’s challenges, dreams and nonprofit work have inspired our family to step outside of our comfort zone. We have been so encouraged and humbled by the love and support we have encountered. She has taken us on a completely unexpected journey. Now we cannot imagine life any other way. The view from where we are is beautiful.

For more information on RaceRunning, check out www.racerunning.org. To learn more about Sayers’s efforts to help others discover RaceRunning in the USA, please visit www.watchmerun.org.