Meet Luke

Posted on March 5, 2010

This handsome little guy belongs to very good friends of ours.  Shortly before I took these pictures last fall, Luke was diagnosed with Pompe Disease – a very rare genetic disease which affects his muscles. The disease is fatal, however we are thankful that Luke’s doctor is optimistic about his future because his heart has not yet been affected, but that does not mean he has an easy road ahead of him.  As I write this, Luke is almost 2 1/2 and just starting to walk with the help of a walker – a huge milestone for him!  The other good news is that even though this is a very rare disease there is a treatment for it.  The bad news is that it is extremely expensive and it is one that he will need to receive every other week for the rest of his life.

The movie Extraordinary Measures that is currently showing is based on the true story of a father who had two children battling Pompe disease.  Luke now receives the Myozyme treatment that is discovered in this movie.  Research continues in this disease for better treatment and hopefully someday a cure.  To raise funds for the AMDA (Acid Maltase Deficiency Association) and Pompe research, a fundraiser showing the movie Extraordinary Measures is being held on March 18th at the State Theater in Bay City.

To read more about Luke, Pompe Disease, or to see the story ABC 12 News ran about him, please visit his website.  There you can also find information on how to donate to either the AMDA or Life for Luke, both of which will help Luke in this battle.  Please keep Luke and his family in your prayers – I know they appreciate it!

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All images copyright Kate Wakefield Photography 2009