The Eleanore’s Project Difference
It is Thursday night as I write this, after a good work day in which we completed wheelchairs for twelve children from Abancay and Arequipa. Those from Abancay traveled twelve hours to Arequipa, accompanied not only by their parents but also two special education teachers – who were eager to participate in the process with their students. One of them, Cerefina, was so interested that she took video clips through her camera as we measured her first little student!
Later in the day we learned that four kids on our list for wheelchairs already had them from other sources. It was agreed that we would evaluate their wheelchairs and if they were appropriate they would go home, if they needed adjustment we would inform the other parties of what needed to be done, and if the chairs were inadequate we would replace them. We sent one girl home, with recommendations for adjustments. The other three kids had such inappropriate wheelchairs that we replaced them. Here are two stories of a boy and a girl for whom new horizons opened because they were provided with chairs appropriate for their needs and customized to fit them properly:
Ana Maria is 7 years old with severe cerebral palsy; her 4 year old sister Danitza had received her first wheelchair earlier in the morning. At that point, their mother had thanked us effusively as she described her back pain related to the physical demands of caring for two daughters with cerebral palsy. Ana Maria was swaddled in blankets with only her head visible so at first it was hard to tell much about her. But when the blankets were removed her thin legs were crossed tightly at the knees and it was obvious that one hip was dislocated. She had good head control but her back was rounded forward so it was hard for her to look anywhere but down. The real shocker came when we saw her old wheelchair. She was held in by a chest strap, sitting barely on the edge of the seat with her rigid little legs crossed and pulled back under the seat.
Several hours and some intense work later, Ana Maria sat in a tilt-in-space wheelchair with a molded foam backrest that accommodated her shape so that she could relax and look around. As we worked with her we found a position where Ana Maria could sit comfortably without crossing her legs. Her parents were unaware that her hip was dislocated or the dangers of allowing her to habitually sit and lie down with her legs crossed. We spent time teaching them alternative methods for carrying Ana Maria and positioning her for sleep at night. Ana Maria’s father expressed amazement that his daughter could sit so well, and gratitude for the information about ways to care for her.
Meanwhile, Javier had begun his journey to mobility he had never before experienced. His old wheelchair had tilt-in-space that he really did not need, and lacked a headrest that would make it comfortable to use. He sat in a molded foam seat that had been created for someone else, conforming his body to the shape of the seat and backrest. His mother’s main request was for an abductor – a foam covered support to separate Javier’s knees. Although his legs were not completely crossed like Ana Maria’s, he had the same tendency and his mother was worried.
Several hours later, Javier sat in his new Kid Chair, put his hands on the wheels and pushed himself several feet! He burst into excited laughter, giggling repeatedly as he moved himself around for the first time. Not only did he have the abductor that his mother wanted but he was able to reach the large wheels to move himself instead of just being pushed by others. The expression on his mother’s face was priceless, as she caught a first glimpse of her son moving himself under his own power. In short order Javier had learned to turn both ways and go backward. I am pretty sure that he will never again let anyone put him in a chair with small wheels out of his reach!