In many ways Keenan Cahill is like many other 16
years old. He loves music, and likes to lip-sync to his favorite
artists. However, unlike most 16-year-olds, when Keenan posts a video of
himself lip-syncing on YouTube, he can get up to 37 million hits! His
big "break" came when his video of Katy Perry's
"Teenage Dream" came to the attention of Katy Perry herself, who tweeted
about it, and the rest is history. Keenan has had guest appearances on
his videos by 50 Cent, David Guetta and even Jennifer Aniston. He also has his own YouTube channel.
All this is pretty remarkable in itself, but now add the fact that Keenan Cahill suffers from Maroteaux-Lamy Syndrome,
also known as MPS-VI, where the body is unable to metabolize certain
glycosaminoglycans. Diagnosed at the age of one, Keenan has undergone a
bone marrow transplant in 1997 to slow down the
progression of the disease, and has had multiple surgeries, including
surgery to relieve pressure on his brain.
The mucopolysaccharidoses are a group of inherited metabolic diseases caused by the absence or malfunctioning of certain enzymes needed to break down glycosaminoglycans - long chains of sugar carbohydrates in each of our cells that help build bone, cartilage, tendons, corneas, skin, and connective tissue. Glycosaminoglycans (formerly called mucopolysaccharides) are also found in joint fluid. People with a mucopolysaccharidosis either do not produce enough of one of the 11 enzymes required to break down these sugar chains into proteins and simpler molecules or they produce enzymes that do not work properly. Over time, these glycosaminoglycans collect in the cells, blood, and connective tissues. The result is permanent, progressive cellular damage that affects the individual's appearance, physical abilities, organ and system functioning, and, in many cases, mental development.
It is estimated that one in every 25,000 babies born in the United States will have some form of the mucopolysaccharidoses. It is an autosomal recessive disorder, with the exception of MPS II, or Hunter syndrome, in which the mother alone passes along the defective gene to a son.
Currently, Keenan undergoes weekly infusions — enzyme replacement therapy — to stabilize his disorder and extend his life. Unfortunately, this therapy is expensive, which lead to his most recent video project. Keenan teamed up with two members of the reigning World Series champion San Francisco Giants baseball team, Cody Ross and Brian Wilson. The three of them, along with Giants mascot Lou Seal, got together to perform Taio Cruz’s “Dynamite” in an effort to raise awareness for a charitable event that Ross and Wilson are holding at the team’s May 25th game against the Florida Marlins, called “Dynamite: A Fundraiser For Keenan Cahill.” Here's the video:
The mucopolysaccharidoses are a group of inherited metabolic diseases caused by the absence or malfunctioning of certain enzymes needed to break down glycosaminoglycans - long chains of sugar carbohydrates in each of our cells that help build bone, cartilage, tendons, corneas, skin, and connective tissue. Glycosaminoglycans (formerly called mucopolysaccharides) are also found in joint fluid. People with a mucopolysaccharidosis either do not produce enough of one of the 11 enzymes required to break down these sugar chains into proteins and simpler molecules or they produce enzymes that do not work properly. Over time, these glycosaminoglycans collect in the cells, blood, and connective tissues. The result is permanent, progressive cellular damage that affects the individual's appearance, physical abilities, organ and system functioning, and, in many cases, mental development.
It is estimated that one in every 25,000 babies born in the United States will have some form of the mucopolysaccharidoses. It is an autosomal recessive disorder, with the exception of MPS II, or Hunter syndrome, in which the mother alone passes along the defective gene to a son.
Currently, Keenan undergoes weekly infusions — enzyme replacement therapy — to stabilize his disorder and extend his life. Unfortunately, this therapy is expensive, which lead to his most recent video project. Keenan teamed up with two members of the reigning World Series champion San Francisco Giants baseball team, Cody Ross and Brian Wilson. The three of them, along with Giants mascot Lou Seal, got together to perform Taio Cruz’s “Dynamite” in an effort to raise awareness for a charitable event that Ross and Wilson are holding at the team’s May 25th game against the Florida Marlins, called “Dynamite: A Fundraiser For Keenan Cahill.” Here's the video:
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