Author: Iman Nawaz
Iman was born with a rare mitochondrial disorder (MPV17). Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When mitochondria fail due to a disorder, less and less energy is generated by the body affecting the function of different parts of the body. The condition is very rare and there is no known cure at present. Up until the age of 1 there was no noticeable difference between Iman and other 1 year-olds but as she got older the differences became more apparent. By now, the mitochondria failure was beginning to significantly affect the brain, muscles and nerves leading to a developmental disorder, and speech and mobility issues. When she turned 7, she suddenly became very ill and stopped walking. With special equipment and physio she managed to start taking a few steps. As Iman became older it became more and more difficult for her to carry out her day to day tasks. Her condition has had a particularly negative impact on her ability to walk so she now crawls as it is difficult to use a wheelchair in the home. Her hands have closed due to muscle weakness and she generally gets tired more easily. She is unable to sleep through the night and needs to go to the bathroom several times. As she gets older, accommodating such needs is becoming increasingly difficult. A home adaptation can certainly help to alleviate some of the difficulties Iman currently faces.