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Greetings from Alabama! 
Lucas Matthew Embry, born June 11, 1999, was diagnosed October 3, 2003, with Sanfilippo Syndrome. A skin sample was taken to further test and confirm the diagnosis. In December 2003 the final diagnosis came. Luke has MPS-IIIA, Sanfilippo Syndrome.
Sanfilippo Syndrome is a very rare genetic condition with no cure. It causes both mental and physical regression. Luke will eventually become immobile. It has already resulted in Luke's hearing loss, lack of speech development, and his inability to become "potty-trained." The average life expectancy for children with Sanfilippo Syndrome is 10-14 years.
While Luke has never spoken in sentences, his hearty laughter and beautiful smile communicate so well to those who know him. He's an active, wonderful, loving child who enjoys life. Luke loves to watch Barney, Blues Clues and Elmo. He makes friends everywhere he goes.
We hope that by creating this site we can provide the most recent information on Luke's condition. For more information on Sanfilippo Syndrome, please see the link below to the MPS Society website. Thank you for all of your prayers and for visiting our site! Please sign our guestbook before you leave.
"My soul, wait silently for God alone, for my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved. In God is my salvation and my glory; the rock of my strength and my refuge is in God. Trust in Him at all times, you people; Pour out your heart before Him; God is a refuge for us."
Ps. 62:5-8
Journal
NEW WEBSITE!!!! SEE BELOW!!! Good morning!
While I will not be taking this site down for a while, we have created a NEW caringbridge site using their "new and improved" pages. Once you visit and sign in, it will automatically notify you when we update Luke's website. The new site is:
www.caringbridge.org/visit/lukeembry
Take a look and sign in. Leave a note to let us know what you think of it. As always, we appreciate your checking in on us!
Read Journal History
Links: http://www.nikken.com Information about the Wellness Home products that are working so well for Luke!
http://www.barney.com The Barney Site (the dinosaur ... not the dog! For photos of Barney -- the dog -- click on the photo album link.)
http://www.hatchbacksfootwear.com Luke's New Shoes :)
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