Michael from Preston Victoria, is 12 years old and has an older brother and younger sister. He was diagnosed with Metachromatic Leukodystrophy in 2006. Myelin is the substance that surrounds and insulates the nerve fibres in the nervous system. In leukosdystrophy the myelin is damaged causing loss of normal brain and bodily motor functions. His condition renders him bed bound. Michael is seen by doctors at the Royal Children’s Hospital, where he is often admitted with respiratory issues.
The diagnosis has had an immeasurable impact on the family. Within the space of six months, Michael lost the ability to walk, talk and eat; amongst numerous other things. Being paralysed means he is totally dependent upon his family. He is also a very average sleeper so looking after him is a 24/7 job. His parents decided early on that they would do all the care themselves and this has had obvious consequences in relation to finances, socialising and time allocated to the other children.
Michael goes to a special school on most days. He really enjoys this and it gives him an opportunity to see and interact with others. Severe scoliosis makes sitting up difficult, so for the most part Michael remains in a lying position. Being unable to use his hands also limits Michael’s ability to participate but he enjoys school regardless.
According to Michael’s father, Charlie “an RCH staff member suggested we join Brainwave and Brainwave have generously supported us through the purchase of a foam wedge for Michael to lie on at home. We already had a day bed, but the wedge gives us additional opportunities to vary Michael’s position throughout the day. Charlie says, “it is most important that Michael experiences different positions and angles so that the risks of pressure sores and respiratory issues are minimised. Some days Michael is not happy on a particular apparatus so having the ability to interchange between them is extremely important”.
General Manager, Caroline Scully says “It is heartwarming to know that through the use of equipment such as a foam wedge, Michael is afforded opportunities we take for granted, the freedom of movement. Thank you to our wonderful supporters, trust funds and corporate sponsors that enable families such as Michael’s, these opportunities.