But Emma progressed, slow and steady. As she grew and became able to move about with the help of a walker, it became clear that her mind was sharp and her determination on par with her mom’s. At two years old, she still couldn’t lift her arms, and the smart little girl wanted more. “She would get really frustrated when she couldn’t play with things like blocks,” Lavelle says. And so the mom would be Emma’s arms for her; playing with blocks, eating, brushing teeth. Then came the WREX, demonstrated at the conference by an 8-year-old AMC patient lifting his arms and moving them in all directions. Lavelle met with the presenters, Tariq Rahman, Ph.D, head of pediatric engineering and research, and Whitney Sample, research designer, both from Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware. Rahman and Sample had worked for years to make the device progressively smaller, serving younger and younger patients.
Attached to a wheelchair, the WREX worked for kids as young as six. But Emma was two, small for her age, and free to walk. In Sample’s tool-and-toy filled workshop, the team strapped Emma’s little arms into a small but awkward trial WREX attached to a stationary support. “She just started throwing her hands around and playing,” Sample says. Megan brought Emma candy and toys and watched her lift her arms toward her mouth for the first time.