On Friday Sammie and I met Jesús, who is 22 years old. We were supposed to visit him the day before, but roads were closed because of flooding. On the way to his house we witnessed the Rimac River raging, sandbagged intersections and people cleaning their streets that had been previously flooded. Elizabeth (OT) and Margot (social worker) together with our interpreter, Stephanie, were our companions.
Lucia, Jesús’ mother, met us at the door and led us to meet her son lying in bed. She became connected with Yancana Huasy only one month ago, after seeing someone else’s child in a customized wheelchair and asking where it came from. Since then she has attended every class on 24 hour postural care and wheelchairs, even though she must travel a fair distance. She sends photos to Elizabeth asking for advice on what she is doing. Lucia has created a sleep system to position her son therapeutically while he lies in bed. She was glad to report his gains, is especially excited about improvement in his breathing and said he sleeps much better now. Elizabeth pointed out that Jesús is already less windswept (a term used when both legs fall to one side) after only a few weeks.
We then saw the custom tilt-in-space wheelchair that Elizabeth and colleagues have been working on for Jesús. It is still a work in progress, but is a clear demonstration of the skills they have developed as seating therapists. It is also clear that Jesús is benefiting together with his mother! For the first time in 22 years, he can eat sitting in a chair rather than being held in his mother’s arms. Lucia is now taking him for walks in the neighborhood which he enjoys. This was impossible in his former, inappropriate wheelchair, which caused him great pain.
Jesús and his family are a wonderful example of what can happen through collaboration with caring professionals, who provide meaningful education in ways that make sense for lay people who want to do the best they can for their loved ones.