Will Luthcke is an adorable six year old and nephew of my friend, Michele Burbank.  In 2007 Will was diagnosed with Sanfilippo syndrome - Type A.  This is a rare and devastating disease, occurring in 1 of 70,000 births.

Sanfilippo is a genetic metabolism disorder of which there are four types. Type A, which Will has, is the most common and the most severe form of the disease.  The body builds connective tissue with long chains of sugar molecules.  When no longer needed, these molecules are broken down and disposed of by various enzymes.  Children with Sanfilippo are missing or are deficient in one of these enzymes, causing the molecules to be stored in their cells,  Sadly, this leads to progressive damage to their little bodies and early death.  Children born with Sanfilippo show no signs of illness at birth, but as the disease progresses they lose their ability to speak, walk and eat.  Death usually occurs between the ages of 12-20 years.

There is no treatment or cure, but Will's family and friends are trying to raise awareness, promote research and improve the quality of life for all children struggling with this cruel disease.  To learn more and find out how you can help, visit The Will Luthcke Foundation.

Yesterday Will and his family, along lots of friends and supporters, gathered at Paradise Point at Lay Lake for the Fishing for Will Bass Tournament.  Everyone had a blast and funds were raised to help find a treatment and cure for Sanfilippo syndrome.  Hopefully pictures from the event will be posted to the website soon!

Please help spread awareness and find a MIRACLE4WILL!