Luke was a little boy born in November 2003 following a text book pregnancy. Within hours of his birth it became apparent that there was something very different about Luke, he was quite a floppy baby, had a smallish head, slept a lot and wouldn’t feed orally. After an MRI scan which identified that his brain had not developed properly during pregnancy, his condition was diagnosed as Microcaphely, which literally means small head. The cause of his brain malformation has never been identified.
Luke’s condition came as a complete unexpected shock to his parents who were frightened as to what the future would hold. People were naturally sympathetic to their situation but so many of them assumed that the ‘system’ would be there to help.
Caring for Luke introduced to his parents a whole world that passes so many people by, the world of disabled parenting. Luke constantly required one to one care 24 hours a day which can be an exceedingly draining experience. So many day to day things become challenging, simply going out for a walk required packing a lot of equipment. Taking a holiday was a huge exercise. In the early days his parents would holiday separately, one of them staying at home to care for Luke. Caring for him in his home environment was generally the simplest option as he had established routines and equipment for his care. As Luke grew in size and weight the house needed major adaptations to accommodate him.
Looking after Luke was an exhausting process. Every day he would start crying inconsolably at around 4 o’clock for a period of at least 3 hours. He had no mobility and so had to be moved around in his wheelchair and lifted about which as he grew older became more challenging. Luke had very poor eyesight; he could only differentiate light and dark. However, Luke could hear and often responded very well to sound. He seemed to particularly like toys that made electronic sounds. Luke had very little conscious limb control and when his parents played with his toys they would sometimes be rewarded with Luke expressing his appreciation by smiling, opening his eyes wide and giggling, which was a very satisfying reaction indeed. As Luke got older feeding became harder as his reflux became a big problem for him and the amount of time spent feeding him became considerable. A little while after Luke’s 4th birthday he became ill and it was necessary to abandon oral feeding completely and instead rely on an NG tube and later a gastrostomy.
His parents welcomed all respite care that was on offer, the biggest offering came from the Wing Unit when Luke was about 2 years old. Wing offered overnight residential care for Luke in their unit one night a week. This made an enormous difference to his parents who could get a good night’s sleep at least once a week before Luke returned the next day. Luke became familiar with the Wing Unit and recognised his carers. Knowing Luke was in a familiar setting with people who knew him well meant his parents were confident leaving him and could relax and enjoy their time apart.
Luke died very suddenly in March 2009 at the age of 5 and a half following a fun weekend. He went to bed as normal on the Sunday night. The following morning, he was found looking very pale and lifeless in his bed. Luke had inhaled mucus in his sleep which had caused a blockage in his airway which he was unable to clear for himself. He would often cry during the night to let his parents know that he was uncomfortable but on this occasion he just wasn’t able to let them know. Luke is remembered by all who knew him as a very smiley, giggly little boy who loved being with people and who brought huge joy to everyone he met. He is missed immensely.