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Hi!
I'm Brian Dennis Daugherty. I was born on December 16, 1973. While
I seemed to have a typical pattern of development as a baby, at three
years old, symptoms I was having led to the diagnosis of a rare disease.
This deadly disease is called Mucopolysaccharidosis VI, Maroteaux-Lamy
or MPS VI. This disease affects hundreds around the world.
People who have M.P.S. are unable to process certain enzymes needed to break down waste in the body. The waste that builds up is known as mucopolysacchrides and are long chains of sugar molecules used in the building of connective tissues throughout the body. "Saccharide" is a general term for a sugar molecule (think of saccharin); "poly" means many and "muco" refers to the thick jelly-like consistency of the molecules.
There is a continuous process in the body of replacing used materials
and
breaking them down for disposal. Children with Maroteaux-Lamy are missing
an
enzyme which is essential in cutting up the mucopolysaccharide called
"dermatan sulfate." The mucopolysaccharides remain stored
in cells within the body causing progressive damage. Babies may show
little sign of the disorder, but as more and more cells become damaged,
symptoms start to appear - ergo my diagnosis at three years. I have
been living with this disease for 31 years. It has beaten me up pretty
good. However, I am beating the odds. I am living proof that it can
be done. This Web site is all about the disease, how I am beating the
odds, and BioMarin’s enzyme replacement therapy has helped me.
As you read, you will learn why I am doing this. Please visit all the links and learn all about this punishing disease and how you can help me fight it.
CLICK HERE to learn more about how Naglazyme™ has helped me and why I support this new therapy.
Here are a few quick links about the enzyme replacement therapy program
The MPS6CESS Foundation is a 501(c)(3) non-profit, all-volunteer organization dedicated to supporting research for, and the families of, those suffering from Mucopolysaccharidosis, or MPS.
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