Case Owner

The case owner (CO) is a 10-year-old boy with Duchenne muscular dystrophy (DMD),

a disease affecting the muscles, making them weaker over time.

Currently, he uses an electrically assisted manual wheelchair, that can be

coupled to an electric hand bike, to get around. The group works together

with him and his parents, who are both able bodied.  

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CO-DESIGN SPACE

The meetings with the CO and his parents are carried out at their house, as it is easier for the group to travel around and there is enough space for the whole group to visit. The CO and his parents also feel like it is valuable for the group to see their living situation in real life. The CO and his parents are comfortable talking to multiple people. 

In terms of boundaries, some general things to look out for have been discussed with the father of the CO over the phone before the first meeting. The CO is not yet fully comfortable with the progressive nature of his disease and thus the topic about what will happen in the future or things he cannot do anymore is avoided. Besides this, the CO shows discomfort when talking about physical aspects (like most other 10-year-old boys), if these topics come up, the CO is asked if he is alright with sharing/showing things, and he answers honestly. 

The CO and his parents are open and interested in an involved co-designing process, where the group sends text messages, makes phone calls or visits to share and discuss and receive feedback on possible solutions.  

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Based on this, some overall research about Duchenne is going to be conducted and the first, in real life, meeting with the case owner is going to be planned. This can be found on the ‘Research’ page.

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