Case 1 - Rami
"I will go to university. I can compete. I will succeed."
Rami is a fifteen year old boy from East London who has Duchenne Muscular Dystrophy (DMD). DMD is one of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.
The disease started to become evident in Rami at the age of 4. DMD causes generalised weakness and muscle wasting first affecting the muscles of the hips, pelvic area, thighs and shoulders. It goes on to affect all muscle groups including the heart and lungs.
Survival is rare beyond the late twenties. Rami now needs 24 hour care and is unable to dress, wash or go to the toilet by himself. He is a keen football fan and plays wheelchair football. Unfortunately however, Rami was falling behind his peers academically. He was working as hard as he could at school using their computer but he did not have this vital tool at home. He is very bright and was determined that his disability should not hinder his education.
The Assessment
Rami had been using a roller ball school and it was observed that this was very easy for him to use, enabling Rami to exercise control over the whole system. Slightly larger roller balls and joysticks were tried, along with other input devices, only to find that he was unable to manipulate them as easily due to the larger movement required.
Rami needs software as well to gain control of his system. We tried using a couple of different on-screen keyboard systems. Due to the degenerative nature Rami's condition, it is likely that switch access will present the only way forward in the future. The Grid allows you to alter the access method, so that after using the grids for a time and becoming familiar with them, it would be very easy to move to switch control, allowing Rami to continue to get the most out of the system irrespective of his degenerating condition.
The Result
The specialist equipment Aidis provided enabled Rami to carry on his studies at home. He is now doing very well with his G.C.S.E.s and is hoping to take a degree course in information technology.
