Joseph is a 17 year old boy who was referred to us by one of our partner organisations working in the community. He was born well, but had a severe reaction to his polio vaccination at the age of 4, and became severely disabled, with no movement in his arms or legs, though he is still able to talk and understand his family. Because there was no rehabilitation services available at the time, and poor understanding of disability his family cared for him by laying him on a mattress in the room. Over the years he has become fixed into a curled up position, with only a little hand and elbow movement in his right arm.
When I met him, he was curled up on the mattress on the floor, with the family standing over him. His arms and legs are extremely stiff from 12 years of no movement and unfortunately it will be difficult to reverse this but it was important for him to be able to interact better with his family so we suggested sitting him in a chair every day so that he was at eye level with them. We also taught the family about the importance of passive movements to reduce the stiffness in his limbs, and changing position from lying to sitting regularly to prevent further problems.
When we returned a month later we were happy to find him sitting in a chair, and he told us that although he gets uncomfortable because of his stiffness, he enjoys being able to see his family and interact with them better. He even sits up with them while they have meals, though he is unable to feed himself. We have also noticed an increase in the movement he has in his right hand and arm, and there is a little movement in the left now. We gave him activities to practice while he is sitting in his chair, and have provided a made to measure chair for him so that he can be more comfortable. We continue to see Joseph on a regular basis to continue to develop the movement that he has with an aim to be able to feed himself.
There are many children that we see each week with stories similar to these, often the diagnosis is different but the outcomes are the same: A loss of movement, a loss of independence, reliance on family and inability to interact with family and friends.
Our goals are often similar, educate the family on the causes of disability – that it is not witchcraft, the devil, contagious, or a curse, and to reinstate hope and a belief that the child can improve with intervention.
We look to improve on their mobility skills such as sitting and walking, personal skills such as bathing, feeding, toileting, and interacting with family and friends.