Erin and Jade sit across from one another in their bedroom, giggling and playing. Dressed in bright pinks and yellows, they look like little mirror images of one another, with one exception. While Jade perches on the bed, Erin sits in a tiny pink wheelchair because she is paralyzed from the chest down.
At only five years old, the twins have been through a lot together, and they share a unique bond. They were born conjoined at the torso, and Erin’s heart extended into Jade’s chest. Less than six months after they were born, they underwent separation surgery.
After everything Erin and Jade had been through in their short lives, their parents Melissa and Kevin weren’t prepared for yet another hurdle. But, prepared or not, Melissa will never forget the moment she realized her daughter was paralyzed. She and Kevin took the six-month olds in for their vaccines. Jade cried as she was given the shots, but Erin didn’t even bat an eyelash.
“She smiled through the whole thing,” says Melissa. “I turned to Kevin and said, ‘Something is seriously wrong.’” A neurologist confirmed their suspicions, and painted a very grim picture. The family left believing Erin would never recover any sensation below her waist.
“We had tried to prepare ourselves for every possible outcome,” Melissa says. “But that wasn’t even on our radar. After everything else, we thought ‘now we get to live happily ever after,’ but it didn’t turn out like that.” As she tried to come to terms with Erin’s diagnosis, Melissa began reading about paralysis, and learned about the International Center for Spinal Cord Injury at Kennedy Krieger Institute. She immediately called for an appointment. “I just knew that Kennedy Krieger was where we needed to be,” says Melissa.
The Center is unique in that it is one of the few in the world focused on rehabilitation and restoration for children with paralysis. Because relatively few children experience spinal cord injuries, most therapy programs are designed for adults and must be modified for children. But this clinic was created with the needs of children in mind, and the physicians, therapists, nurses, social workers, and educators have committed their careers to meeting the unique needs of children and adolescents with disabilities.
Because their bodies are already naturally inclined to grow and develop, children have a much greater potential for recovery than most adults. After evaluating Erin, the Center’s team felt that because she was so young, Erin still had a chance of not only recovering sensation, but possibly walking someday.
When Erin arrived at the International Center for Spinal Cord Injury, she wasn’t able to move anything below her chest at the level of her injury. If there wasn’t someone around to assist her, it was almost as though she was frozen in place: She couldn’t get up on all fours, she couldn’t crawl, and she couldn’t sit or kneel without supporting herself with one arm.
But from the earliest appointments, Melissa has seen signs of hope. She remembers crying as she watched Erin stand up for the first time with the help of special braces that stabilized her legs and kept her balanced. And she’ll never forget the time Erin was in the Lite Gait — a harness system that can support patients with spinal cord injuries — and her therapist said “Erin, stand up,” and as Erin concentrated with all her might, her legs moved ever so slightly.
“They may seem like baby steps, but for us, they’re enormous,” says Melissa. And because of those baby steps, Erin is now able to sit up without support and dress herself. She can even move into and out of her wheelchair without assistance, which means she’s able to keep up with her sisters and classmates.
And to make it possible for Erin to stay at home and go to school, the team at Kennedy Krieger has helped Melissa and Kevin bring therapy into the home. The family has a Functional Electronic Stimulation bike and a Lite Gait so they can work with Erin on physical therapy exercises. Erin still makes visits to the Center regularly for more intensive therapy.
Through it all Erin has her sister to lean on. While she is in therapy, Jade plays at her side. And although Jade can walk and run, she’s happiest sitting right next to Erin.
“They are the best of friends,” Melissa says. “Erin and Jade are like a little team, protecting and watching out for one another.”