Monday, June 7, 2010

Be the Change Inspiration

Our son Michael is the inspiration behind Be the Change. Even as a young boy he challenged nurses and doctors to treat him like a real person not just a boy with a rare disease. He wasn’t just a little boy who looked like he was four even though he was ten or just the boy who had to transition into a wheelchair because he couldn’t walk anymore. He was a real boy who just wanted to be like other kids. It’s very easy to look at a situation like ours and just see the diagnosis and forget that there is a real patient and family behind the diagnosis.

Michael attracted a fair amount of attention from the medical community (actually everywhere he went) for various reasons but mainly because of his rare syndrome. At the time of diagnosis in 1999 it was estimated that there was approximately 25 reported cases in the world. Unintentionally, the medical community and maybe even we expected him to act to much like an adult because of his rare syndrome but the truth was he was just a little boy forced to live much of his life in the adult medical world.

People often commented on how Michael talked like an adult even though he was so young. I think it was because he was constantly surrounded by medical terminology and adult conversations. When he should have been riding his bike or in time out because he called his sister a dork, he was having MRI’s, surgical procedures and kidney dialysis instead.

Over and over again we asked Michael to trust us and the health care staff that was providing the medical care his syndrome required. Yet in order to do that he had to be involved in those adult conversations in varying degrees. This is why relationships with nurses and doctors taking care of him and doing things to him is essential. Only through a mutually respectful relationship could Michael start to trust them. Relationships develop and build trust and without it the quality of care is diminished.

Be the Change gives a face and voice to the importance of strong relationships and partnerships in health care. A patient and their family will automatically have a better medical experience when the human experience is respected, nurtured and valued.

Michael wasn’t just a boy with a rare syndrome; he is so much more than that. Now he is the face of Be the Change and I am his voice. Contact me at if you would like to hear Michael’s story and how he inspired me to carry on what he started. You will hear about his life experiences, our family’s journey with him and the powerful impact he made on everyone he met. It is a story of hope amidst change. His young life will inspire you too, giving you the chance to Be the Change.

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