October 2019: today is a wonderful sunny day. There is a brightness in the air that enhances the red of the blooming hibiscus in the hospital garden. The sky is clear, almost to be forgiven for how it was yesterday, gray and rainy.
The first patient in the orthopedic surgery is Timothy, a young man of 20 accompanied by Ruth, his mother, who supports him as he enters the clinic: it is evident that he has difficulty walking independently. The effort he does to move is impressive, we almost put him on the bed. Observing his stunted movements, his problem becomes clear to me, which will later be confirmed by the visit: he is affected by a disease that affects the muscles of the limbs and trunk, gradually weakening them. (His future is likely to be the wheelchair, and the last stage will come when the respiratory muscles, heart, or both are affected.) In a good number of patients these diseases are already present at birth, because they are genetically determined. Some of these are linked to the sex chromosomes.
Ruth tells me that Timothy started showing signs of weakness after age 5, accompanied by little interest in playing with other children. He was always the last in running after the ball. She accompanied him to primary school and his classmates helped him with his travel needs within the school. He did not continue his studies with high school. I help him get off to better examine how he walks. He can stand up and stand up only if supported by the armpits, then when he finds the point of balance he begins to walk by bringing the pelvis forward and the back and neck back to maintain the center of gravity and not fall. It is a precarious walk, just a small stumbling block and he can fall, as often has already happened, according to the story of his mother: as a child he broke his arm when he fell. It is strange that he did not get other fractures, but this is justified by the fact that he has a walking range of a few tens of meters, so the risk of falls is low. I think it's time to get him a wheelchair, I'll send him to the APDK (Association for Physically Disabled of Kenya) for them to get it. The boy speaks very little, he looks at me as if he already knew that there will be very little for him to do. Resignation is expressed by a shy smile with which he tries to respond to mine. I don't want to ask him too many questions about his state of health, that's enough for me: I prescribe cortisone drugs and talk to the physiotherapists to start an assisted mobilization plan. I propose the wheelchair. The same smile tells me that he accepts and has understood that there is no other remedy. I'll see him again in a week. At the moment of farewell Ruth approaches and whispers to me that she has another 6-year-old boy with the same problem but who is also a carrier of Down Syndrome. More than a request for help, it is the confession of a shame, of a suffering kept inside for too long.
Big bad business. He had to let off steam with someone: it's a test of trust, I'm happy, glad I won it. I invite you to take the baby to the next check-up, along with John.
One week has passed. Ruth shows up at 8 am with her two sons, Timothy and John. I immediately ask Timothy how he is, he replies: "end"(I have not yet found a patient who answers differently, perhaps the"end”Corresponds to“ as you can see I'm still alive ”and for the people of slums this is not a trivial matter). Observing his movements and visiting him I see that his strength has not improved at all. However, he must continue medical therapy for now, in addition to physiotherapy. Now I turn to little John who has the characteristic appearance of a Down child and in addition extreme weakness in the arms and legs. He is five years old, he too walks only if supported, he is always in his mother's arms, he shyly answers a few simple questions in Swahili. Ruth had her two children by two different men: at this point it is clear to me that the muscle disease the children suffer from is linked to the X chromosome and that she is a healthy carrier of this disease. Today Ruth is more relaxed than last week, she has taken confidence in us and says that she now lives with her elderly parents after both men she lived with abandoned her when they became aware of the children's illness.
I call the pediatricians to consult, Maria Vittoria arrives accompanied by Barbara and Stefano, two pediatricians from Siena who periodically come on a mission, and we evaluate the child together. For now we let him manage by our physiotherapists too, there is not much hope in consideration of the fact that his symptoms appeared earlier and are more severe than those presented by his brother at the same age. I looked at Ruth as she held her baby in her arms and tried to imagine how hard her life is: abandoned twice by those who could not bear the stigma of having a child with disabilities. Nello slums this is the fate of most mothers with disabled children.
As a man I feel ashamed. I feel anger, disappointment, frustration and helplessness in the face of these miseries: extreme poverty is a dead end from which one cannot escape, it often becomes a school of oppression, of violence. Mors your life mea. Selfishness, superstition, cultural and material poverty that prevents you from thinking about a better life, having a purpose, an unimaginable future in the squalor of the slums whose you live. I know how much it hurts us in the rich world to learn about this, but it's easy to judge with a full stomach, a car, a TV and a house worthy of the name.