This morning we rose bright and early to leave our hostel in Arequipa at 6:30 am for flights to Lima. It was an intense and productive week at Carmen Alta with several twelve hour work days. The Lions Clubs sponsoring the clinics gave us great support with delicious home cooked lunches each day. Most of the kids and families with whom we worked waited for hours to be seen and in some cases had to leave and return the next day before they were even evaluated – we had difficulty dealing with the numbers and intensity of the needs and these families were so gracious and patient. Following are some memorable stories from the week:
Lisandro (15) has spina bifida and was carried to the clinic by his father, who is raising him alone. He has a wheelchair before but it was a plastic patio chair on a frame with wheels, and it broke. Lisandro was exceedingly shy and initially refused to look at the camera or his therapists. Then we learned that he had never seen “gringos” before! His father, Edgar, gently coaxed and reassured him to allow us close enough to evaluate his wheelchair needs. In the end, Edgar was pleased with the lightweight, streamlined chair that is easy to move around in, and said he thought Lisandro would like it to. At the end he was even willing to look at the camera!
Sharmely is 8 years old and has dystonic cerebral palsy. She arrived carried on her mother’s back in a blanket. We were short on wheelchairs of the type she needed, but had some extra stroller style chairs and found a tilt-in-space frame that was suitable for her needs. We created a much stronger and more supportive seating system for Sharmely and were progressing nicely when I realized that the chair had no brakes! It was a distinctive model that no one in our group had ever used before. Our creative team went to work trying to design brakes that would work, as the clock ticked toward the time when Sharmely had to leave to catch the bus home – 7:30 pm. Suddenly we realized that an identical chair in a different color was in our stash and when we looked – it had brakes! We robbed them and Sharmely was surrounded by a “pit crew” for the final fitting of her chair while brakes were installed at the same time. We heaved a sigh of relief as they left in a taxi to the bus station with the new chair.
Giorghino is 21 but he is the size of a 10 year old. He has microcephaly with serious movement problems and had never had a wheelchair before. He had only one scar from a pressure ulcer – not bad for his age and the intensity of his impairments. Giorghino waited for most of a day and then went home without being seen by our team. He returned the next morning with his aunt – and later his mother – and spent most of the day in the clinic. We incorporate education in postural care for all the families – a method by which the body shape of people with movement problems can be protected and in some cases, improved. Halfway through the day I did a presentation on the principles of postural care for the families. Prior to the presentation Giorghino’s therapist, Kim, had tried to demonstrate a different way for him to lie comfortably in bed, but he immediately cried and resisted. After the presentation Giorghino’s aunt wanted to try again and he did fine. He left sitting up in a wheelchair instead of being carried in a blanket.
Maria Jesus is 20 years old and like so many young people with cerebral palsy, has never had a wheelchair or any kind of positioning to help her sit up or to protect her body shape. As a result, her left hip is painfully dislocated and designing a chair that could enable her to sit was a huge challenge that was perfect for Sammie! In our group we have coined a new term – “Sammified” – for Sammie’s incredible creativity unleashed on a wheelchair! Sammie is not only an occupational therapist with many years of wheelchair seating experience, but she is also a wood sculptor. Her ability to match seating surfaces to unusual body shapes is a tremendous gift to young people like Maria Jesus, as you can see.
Leaving Arequipa meant leaving four valuable team members: Jeff and Abby States, a father/daughter team who worked together on the technical end with the wheelchairs, Mary Jo Wagner (occupational therapist) and Martine Ravioli, translator and story collector. We all gathered for a team photo prior to parting after this memorable week. I write this not from Lima, where our team has expanded again with nine people who arrived from the United States last night. Here is the Arequipa team photo of the people who made it possible for 41 children and youth to go home with custom fit wheelchairs, postural care training and new possibilities last week!