The challenge was how to enable Theo who has Nemaline Myopathy to use his arms so that he can use a tablet, play with toys etc. The major clinical features of nemaline myopathy are muscle weakness, hypotonia and reduced or absent reflexes. Theo suffers most of the clinical features mentioned above and is connected to a meter to constantly measure his stress level. We were challenged to find a way to enable him to raise his arms to be able to reach his touch screen and maybe eventually being able to feed himself.
We managed to design a proof of concept device for one side only involving springs to provide lift in his arms which showed some signs of success when fitted. We kept in touch during lockdown and initial feedback was that he needs a stronger spring.
After several iterations in the workshop we had designed a pendulum type device with variable load capability by means of a sliding weight which can be easily adjusted.
These have now been fitted and initial observations look promising, as the counterweight not only gives the lift assistance but also may help in exercising the arm muscles in the opposite direction.
Theo using his tablet.
Exciting news is that Theo has assisted movement now from his tray table up to his face.
This looks like the first stages of him feeding himself. Will continue to monitor remotely.
Theo playing with his light toy