Having a downstairs wet room, bedroom, living area and store room would help drastically improve Iman's quality of life. Her mobility is declining rapidly as she gets older. Getting up and down the stairs is proving to be a real struggle and so a downstairs bedroom/wet room will be a lifeline. She currently gets around the house on her knees because the layout is not suitable for a wheelchair. She has really worn out her knees. Access to the current bathroom is now difficult for her on her own and she sometimes ends up having toileting accidents. The bathroom standard fixture and fittings also mean that she has very little independence. As her hands are closing up, she is unable to operate taps, flush levers and needs 1-2-1 supervision. Garden access is poor and without ramps, Iman is unable to access this.
The home adaptation would allow Iman to overcome many of these limitations. She would be able to use her wheelchair within and outside the home, giving herself some independence. She is often unable to join her siblings playing happily out in the garden and sits and watches from the window inside. The ramp access into the garden would allow her to independently go outside into the garden as she pleases. Iman sometimes requires showering a few times a day and this would be so much easier in wet room on the ground floor.
Iman enjoys going on a specially adapted bike and at the moment there is no place to store this along with a wheelchair and other specialist equipment. A store room would allow Iman to keep her specially adapted equipment in a secure place providing easy access for when it is needed.
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.