More About Trey Lane
Michael Trey Lane is four years old and lives in Chandler , Arizona with his family, including two big brothers, Drake and Broc. Trey has been diagnosed with MPS IV-A. Although there is no cure nor treatment for the disorder, his family has been told that an infusion therapy is being tested and is in Phase I and II of clinical trials, taking place in Birmingham, England as we speak. Our prayer is that these trials are bringing encouraging results by crossing the blood bone barrier and that Phase III will be brought to the U.S.A. within the next few years and Trey will be lucky enough to be chosen for it.
Trey's mom has a blog that provides updates about Trey and their families search for hope.
About MPS IV-A
Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.
Link to: National MPS Society