I read about this on my friend Michele's Facebook page this morning. She says "A disease isn't rare if it's happening to you. Visit miracle4will.com and support my nephew's cure!" Will Luthcke suffers from a fatal genetic disorder named Sanfilippo Syndrome. There is currently no cure or treatment. I've written about Will before.....links to those posts are here and here.
Rare Disease Day is an annual event to inform and remind the public, health professionals and policy makers that research is needed to give hope to patients and their families that have … (5 comments)
I had never heard of Sanfilippo Syndrome until recently. My friend, Michele Burbank, has a six year old nephew who was diagnosed with Sanfilippo in 2007. His name is Will Luthcke, and there is currently no treatment or cure for his condition. There are different types of this disorder; Will has Sanfilippo syndrome - Type A, which is the most common and the most severe form of the disease.
There is no treatment or cure, but Will's family and friends are trying to raise … (6 comments)
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 … (7 comments)
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