In February, 2009 Caden was diagnosed with Hunter's Syndrome. Hunter's Syndrome or mucopolysaccharidosis II (MPS II) is a serious genetic disorder that primarily affects males. It interferes with the body's ability to break down and recycle specific mucopoly-saccharides, also known as GAG. Hunter syndrome is one of several related lysosomal storage diseases. This is a rare condition affecting 1 in 100,000 to 1 in 150,000 males. In Hunter syndrome, GAG builds up in cells throughout the body due to an absence of an enzyme. This buildup interferes with the way certain cells and organs in the body function and leads to a number of serious symptoms. Not all people with Hunter syndrome are affected by the disease in exactly the same way, and the rate of symptom progression varies widely. However, Hunter syndrome is always severe, progressive, and life-limiting. There is no cure for MPS diseases, but there are ways of managing and treating the problems they cause, including enzyme replacement therapies. Elaprase is approved by the US Food and Drug Administration as an enzyme replacement treatment for Hunter syndrome. Elaprase is a purified form of the lysosomal enzyme iduronate-2-sulfatase and is produced by recombinant DNA technology in a human cell line. Elaprase may be one of the most expensive drugs ever produced, with an estimated cost of $300,000 per patient, per year. Caden began his Elaprase treatments in March of 2009 at Children's Memorial Hospital. Thanks to all the great Doctors and Nurses Caden started doing his weekly treatments at home in October 2009. His Dad Troy has been trained in administering the treatment through Caden's port. The Make-a-Wish Foundation created a "Bat Cave" for the sometimes 4-hour treatments. They furnished the family's basement with a new TV, DVD player, comfortable chair and most important to Caden…a popcorn machine for him to enjoy during his treatment. |
