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Alex’s Upsee Story

Alex is a five year-old boy with Pelizaeus–Merzbacher disease. This a form of Leukodystrophy, a genetic condition characterised by myelin sheath abnormalities. As the role of myelin is to surround nerve fibers and facilitate neuronal impulses, Alex’s sensory and motor systems are affected by the disease.

Clinical Background

Alex has hypotonia and is unable to sit unsupported or walk. However, he is bright and alert, with good comprehension and attention. He is a social child and enjoys playing with other children. Alex has been receiving physiotherapy and speech therapy since he was 5 months old, and at his special school continues these alongside occupational therapy, equine and canine therapy. Alex began using an upright walker at age 3, and with a lot of hard work, made significant progress within the first month, taking more steps than expected. This walker now forms part of his daily home and school activities.

Our Approach

Alex’s parents saw the Upsee online, and based on his progress with his walker, thought that it would help Alex interact with other children as he could play while experiencing upright movement. They also felt that it would lessen the space, distance and portability restrictions of his regular walker.

The Result

Using the Upsee with his parents, grandparents and some family friends, Alex has been able to play football with his friends, take small steps, dance, go for walks and access the beach. Removing the sandals, the whole family was able to paddle together in the sea – family participation. Alex’s parents report that he loved the sensation of the water on his feet, and it was more comfortable for him and them than being held up by his underarms. They report that he responds positively to being at the same height as other children, and has greater freedom for bilateral hand function. In school, Alex has used the Upsee for dancing and rhythm class, and was able to maintain leg and head extension for longer periods. This enables better social interaction, and access to activities he would otherwise be unable to participate in.

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