Stuart has spastic quadriplegic Cerebral Palsy as well as microcephaly and epilepsy with episodes of myoclonic jerks which has left him completely dependent on others. Requiring around the clock care, the brain damage that Stuart incurred during birth has affected both his fine and gross motor skills as well as oral motor functioning. This means that grabbing or grasping things in his hands is not possible, nor are bigger muscle movements like walking, rolling over and crawling. In addition to this, Stuart is unable to talk and converse with you like a normal child, making it incredibly difficult and frustrating for him to express himself or be understood.
IMAGINE what this type of disability means for both Stuart and the care givers in his life? Each day begins with someone having to bath and change him before placing him in his wheelchair and preparing him breakfast. Stuart cannot feed himself so he needs to be fed and once breakfast is complete he needs to be lifted out of his wheelchair and placed into his car seat to be taken to school. Once at school, he needs personal care and constant interaction with a lot of one-on-one time with someone he trusts. Stuart requires continuous therapy and work on his flexibility and muscle tone, speech and sensory capabilities – amongst a number of other things, so that the developments he has made do not begin to regress. Cerebral Palsy is a fairly manageable disorder, but it requires dedication if one hopes to provide a better quality of life for the sufferer.
After school Stuart returns home where the routine of lifting, changing, feeding and stimulating him is a 24 hour a day responsibility. One needs to remember that Stuart does not come to call you if he needs something and he cannot necessarily express his every requirement…to understand him and care for him means being by his side and knowing him.
Despite his disabilities, Stuart is a very happy young man, a testament to his character and one of the many qualities that make him so special. While he cannot see properly, he hears extremely well and absolutely loves sounds and music – if he is not laughing at sounds that take his fancy he is singing along to his favorite music. IMAGINE, by John Lennon is his favorite song; a song title we thought was fitting for the name of this foundation.
Stuart seldom cries or complains, unless he is extremely uncomfortable or sick. What is striking about him is his capacity for patience, as he waits on someone else to provide him with his next step in life. While Stuart suffers from a debilitating disability he is not a difficult child to support! Before he was born we wanted the best for him and nothing has changed…we want him, and others who suffer from Cerebral Palsy, to have the best possible life!