“When she can do things on her own, her confidence just soars!”
The girls were delivered at just 28 weeks, and this came with added challenges, especially for Kennedy. She weighed just 1 lb., 4 oz and eventually would be diagnosed with unilateral cerebral palsy, a neurological disorder that impairs motor function on one side of her body. She spent her first five months in the Neonatal Intensive Care Unit (NICU).
When she turned 5 years old, Kennedy underwent spinal cord surgery, specifically Selective Dorsal Rhizotomy. The procedure identifies nerves that may not be functioning properly and treats them to decrease involuntary muscle movement and stiffness and increase motor function.
Now, at the age of 7, she excels at school and loves to learn and challenge Riley. Her surgery, coupled with consistent hard work has allowed her to now walk 40-50 independent steps and travel even further with someone holding one of her hands. The girls continue to lean on each other as they grow and encourage each other to be their personal best with an understanding that is “uniquely twin”.
It hasn’t always been easy, but Kennedy has that quiet determination coupled with a strong support system and her twin sister by her side. She is often shy at first but once she gets started, it’s difficult to slow her down, and each success only fuels her determination.
Still, car transportation brought challenges. While other kids her age could climb into their seats independently, Kennedy had to be carried to the car, picked up, and manually placed into her car seat. Larger vehicles allowed more room for the family but also meant a higher lift for her parents. Over time, their stress grew, as did the strain on their backs, especially as Kennedy began to grow bigger. Kennedy’s physical progress was an important milestone, but her parents know they needed to search for transportation solutions to grow with Kennedy’s independence.
Kennedy’s mother, Lindsey, spent evenings doing research and weighing their options. Mighty Miss Maya –also a former “micro-preemie” living with CP– and her mom provided wonderful resources and a sense of community for Lindsey and similar families. One night, Lindsey was scrolling on their Instagram page and happened upon a new contest in partnership with BraunAbility and the Lenn Foundation, an organization devoted to providing resources to help families living with disabilities afford therapy and equipment to improve their daily lives.
To celebrate its 50th anniversary, BraunAbility was donating four Turny Evo seats to help families who had a child affected by cerebral palsy. The Turny Evo seat provides one-button vehicle transfer assistance. It lowers to the user’s desired height, completely outside the vehicle, then lifts and swivels the user into the vehicle. The giveaway represented an opportunity for increased independence for Kennedy and decreased physical strain on her parents each time they took an outing. It could also be installed in the family’s Toyota Sienna minivan, one of the hundreds of vehicles compatible with the Turny Evo seat.
“I had zero expectations of winning,” she shared. “It was one of those late-night, half-awake mom moments…I knew it was worth a shot.”
Lindsey was shocked to get a call from BraunAbility a few weeks later letting her know her family would be moving on to the next round of applicants.
She still downplayed any expectation of winning, which made the video conference call from the Lenn Foundation founders even more of a surprise. “When we learned we’d won…well, you could have told me I won the lottery!”
A few months after the announcement, the Willis family had their Turny Evo seat installed in their minivan with the help of their local mobility dealership, Superior Van and Mobility in Evansville, IN. The mobility consultants at the dealership also instructed the family on how to use the back-saving equipment.
“The seat is a great addition to our family. At first, Kennedy was nervous she was going to fall, as the seat lifted her out into the air. It took a little time to adjust to change… but she also loves to be independent.” The family worked together to slowly increase Kennedy’s comfort level with the seat. Sister, Riley, would get in to demonstrate and help show that there was no need for concern.
Now, with her reverse walker, Kennedy can get into the chair by herself. Getting in and out of the minivan is easier than ever, for both he parents and for Kennedy. “For me and for her, it is the best thing ever! When she can do things on her own, her confidence just soars.”
Lindsey loves sharing each success that Kennedy has had. As a mom, she is beyond proud, but she also knows firsthand that parenting a child living with physical challenges has its hard days. “I am so thankful that Kennedy’s surgery was an option,” she said, noting the difference it made in her comfort and mobility. “And I’m so grateful companies like BraunAbility offer specialized equipment that makes such a difference.”
She hopes Kennedy’s story can help lead others to medical and mobility solutions that are right for them. While the Turny Evo giveaway window has closed, the seating solution is available at Access2Mobility.
The Lenn Foundation was founded by two sisters on a mission to make access to life-changing resources more available to children with disabilities. The mission hits close to home, as they are mother and aunt to Lennon, who has had his own unique challenges since birth. Learn more about the Lenn Foundation and the services and resources they provide.