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Maggie is one of Collins Chanika’s clients. She is a two year old girl who most likely has Congenital Muscular Dystrophy, although, due to a lack of specialist medical services, it is difficult to make a definite diagnosis. Collins has been helping with Maggie’s care for the last eight months.
Congenital Muscular Dystrophy is a condition that presents at birth or within the first couple of years of a child’s life. It results in muscle weakness throughout the body and can cause joint deformities. It can also affect internal organs and the function of the brain.
Maggie and her mother live in a village with other members of their family. Maggie is unable to sit up or roll over when laid on the floor. If she is assisted into a sitting position, she cannot always hold her head up due to the weakness in her muscles. She requires help for all her daily care needs. In the last eight months, though, Collins has observed improvements in her attempts to begin moving about, and she is now able to recognise people around her and respond to them which she was previously unable to do. Her legs and arms are becoming stronger.
Due to the weakness in her leg muscles, she is also at risk of getting a secondary complication known as contractures. These restrict movement at her joints and can cause pain when moved. To prevent the contractures forming, Collins has splinted Maggie’s feet. This involves putting Plaster of Paris bandages on her feet and legs to maintain a stretch in her muscles. Once removed the length of the muscles in her legs are checked regularly and her family have been taught stretching exercises they must continue. They have also been advised on different positions she can sit or rest in and the importance of checking her foot position during these times.
Maggie’s feet being splinted
Maggie’s family have been taught the rehabilitation exercises that will try to help her begin to move around more and gain more control of her head position, and they continue these between Collins’ visits. Adequate seating to maintain a symmetrical, well supported sitting position is very important, though, for Maggie’s ability to interact with the world around her. From this position she can see more of the activity around her which will help stimulate her, stimulating objects (such as toys) can be placed in front of her where she can explore them, and it is better for her breathing and ability to swallow. She will also have to learn to control her head position against gravity which helps strengthen the muscles in her neck.
Currently all specialist seating is made by local carpenters out of wood, and Collins has to juggle his budget to provide this much needed equipment to clients such as Maggie, whilst also ensuring he can get other specialist equipment for other clients and getting some of the clients to hospital appointments in specialist centres. He also often gets stuck in himself with the carpenters, assisting them to make the equipment he needs!
Collins helping with some woodwork
As a trial, we investigated the possibility of using old cardboard boxes to make a chair for Maggie, looking at whether other materials are available to build specialist furniture. It took some time to source enough cardboard boxes (they are a rarity out here and when one does appear it is much sought after!), but we were able to get the process underway. Initially the cardboard has to be layered to strengthen it, sticking it together with flour and water paste, before the pieces for the chair are cut from it and joined together.
The chair in progress
Finally, it is decorated and covered with varnish to provide some protection against splashes. Slight adjustments were made once it was delivered to Maggie to ensure she sat well in it. This involved adding some extra support straps to help Maggie’s trunk position. By doing this, she was able to be sat in a better position and hold up her own head.
Once seated well, Maggie was able to complete different exercises and engage with her family more. The aim will be to remove some of the supportive strapping if Maggie’s strength improves.
Unfortunately, it seems that cardboard will not be a material that Collins can use often to make chairs due to its scarcity, so he will have to continue to budget for wooden chairs being made when the need arises.
Maggie is just one of his many clients who need adequate seating to be able to improve their muscle strength, sitting balance and interaction with their families – chairs will improve their quality of life and, for a number, improve their independence in daily tasks. If you feel you could help with a donation towards Collins’ work, please make a donation.