The goal was 3.1 miles worth of steps for Kawai Naehu and Arwen Bookhout. It would take a few sessions over the course of April, and possibly longer, but their sights were set on finishing their first 5K—something their parents hadn’t even thought was possible when they were born.
For their entire young lives, Kawai, 5, and Arwen, 4, have heard doctors and other experts tell their parents that they will have limits. Both were diagnosed with cerebral palsy as a result of hypoxic ischemic encephalopathy (HIE), a birth injury caused by oxygen deprivation. Arwen went without oxygen to the brain for 10 to 15 minutes when she was born, and doctors didn’t know exactly how long Kawai went without oxygen. Kawai was also diagnosed with epilepsy.
Their cerebral palsy diagnoses, which affects movement and muscle tone or posture, has restricted their early years. Both are unable to walk unassisted if at all and are nonverbal. For many children with cerebral palsy and similar conditions that limit mobility, life can be predominately stationary because they often need assistance to move. Weekly physical therapy is often when they get their exercise.
“Everyone puts limits on [Kawai] in his life,” Allicyn Hayes, Kawai’s mom, told Runner’s World. “Many families have this conversation in the NICU about the limits, but we’re not about putting barriers on him. We want to open doors for him. I’m realistic, but I’m also hopeful. As families in this situation, we’re in this together to find ways to open those doors for our kids.”
The HIE community is close-knit, with families connecting all over the world though avenues like Facebook groups. That’s exactly how Hayes discovered Trexo Robotics, which makes gait-trainers for people with limited lower body mobility. Essentially, a child straps into a device that operates with two robotic legs, which have motors in them. The legs are controlled by a tablet, and you can set the speed, the knee and hip extension and flexion, and the gait pattern.
Mostly, devices like this are used with adults—and they come at a hefty price. However, Trexo’s founder, Manmeet Maggu, who has a nephew with cerebral palsy, wanted to get the device in the home for the developmental years to boost mobility.
“We’re now seeing the benefits of daily walking and movement for people with cerebral palsy,” Dina Nikitina, COO at Trexo, told Runner’s World. “A lot of these kids spent their entire lives in wheelchairs and maybe get an hour of physical therapy a week. That was the extent of their exercise. The Trexo helps with core strength, which is important for more than just walking. We’re seeing it help kids be able to hold their head up, communicate, and even be able to eat without a feeding tube.”
Initially, Kawai, originally from Hawaii but who now lives in Denver, wasn’t a candidate for one until he had noninvasive SPML surgery on his hips in July 2019 to help his range of motion, among other things.
His parents were able to get a Trexo device that November. Since he had never walked under his own control, they used the air-walking feature to allow him to get used to the walking motion without having to carry his own weight. Over time, he was slowly lowered to ground to propel his own motion.
The more he progressed, the more his parents wondered what else he could do. That’s when they heard about the Hustle for Hope 5K, outlet adidas queretaro en vivo por internet.
“We lowered Kawai to the ground in April, and he started doing really well,” Hayes said. “We didn’t even know virtual races were a thing, and we thought it would be a good goal for him.”
A similar thought came to the Bookhout family while they were in quarantine for the coronavirus. That was when Bookhout first received her Trexo and heard about the virtual Hustle for Hope.
“She usually does physical therapy in the house and can do like 20 steps very assisted,” Jennifer Bookhout, Arwen’s mom, told Runner’s World. “The first time in the Trexo, she took 250 steps. We were like, ‘Oh my gosh. I think she could do a 5K in her Trexo.’”
Both families signed up and began taking steps at the beginning of April.
Kawai started by walking every other day, going anywhere from 300 steps and working up to more than 800 steps. When he reached the 5K distance, his parents set up a makeshift finish line outside while wearing his race bib. They, and some sisters who were also there social distancing, cheered as he took his steps across the line and received his medal.
“Before he got the Trexo, he wasn’t taking steps on his own,” Hayes said. “To see this progress as a mom was real and exciting. You have highs and lows always. To see these wins and to see things the doctors and therapists told us he would never do, it makes me wonder what else is possible for him now.”
Arwen took a similar path to the finish. Over five weeks, she took steps every day, starting in the 200s and getting as many as 600 before she neared the finish. Being quarantined for so long, her family decided to liven up Arwen’s route around the kitchen and living room on her last day. She had 700 steps left, something she hadn’t done before.
“I had done a half marathon and never done that distance in the lead up to the race,” Jennifer said. “We told her that she had 700 steps to finish. It was getting hard for her to keep her head up toward the end, but she was all smiles. It can take a lot for anyone to do a 5K, so for her to do one was so exciting.”
The steps haven’t stopped for either even though they’ve crossed the line. Both are still getting in their Trexos daily and working toward greater goals—ones they were told would never be possible.
“When someone tells you that your child won’t walk or talk, you’re expecting those to be part of their lives,” Jennifer said. “But it is able to be part of their life. It just comes in a different way. We see this as just the beginning of what’s possible.”
Both Kawai and Arwen used their runs to fundraise. Kawai raised money for Hope for HIE, which you can donate to here. Arwen’s family is raising money for backyard improvements, so that Arwen has more accessibility to use her Trexo. Her donation page can be found here.