Alexia is currently being followed in our research center due to her diagnosis of Idopathic Multicentric Osteolysis. In this condition, there is destruction of the bones in the hands, feet, knees and elbows. The bones “disappear” which makes it difficult for the patient to perform basic physical tasks. There is also a great deal of pain, swelling and stiffness associated with the disorder which causes further difficulty for the patient to perform activities of daily living and keeping up with peers during socialization. In addition, Alexia has had eye difficulties that have lead to corrective surgery. Although there has been improvement, she still has visual impairment.
Despite her physical difficulties, Alexia is a very social, happy and outgoing child. She seems to get frustrated at times but she channels this into ambition and dive to accomplish the task at hand. Rather than seeking assistance with tasks that seem difficult, Alexia demands independence. She has determination that I have rarely seen at her age. I often wonder what it would be like to be a child with a medical condition that makes it difficult to participate in activities with peers at a time when socialization feels crucial. However, it has not slowed Alexia down. She is bright, imaginative, friendly and first to befriend another child.
Alexia is certainly a Hero. She has overcome more in her short life than most of us will in a lifetime. She faces life with zest and has a fire in her belly that will make all her dreams within reach.