The Shawn Brush Foundation
Shawn “The Krooked Cowboy” Brush is a versatile and seemingly indefatigable artist, and this despite the fact that he suffers from a sometimes debilitating condition that would keep many people stuck at home counting down the hours until the end.
He suffers from a rare birth defect known as Morquio syndrome, which basically causes a kind of dwarfism and weakens bone and tissue. As a result the plucky troubadour is confined to a wheelchair most of the time, making it difficult to get into to some venues and near impossible for many others.
WHAT IS MORQUIO A SYNDROME?
Morquio A Syndrome is a rare and debilitating genetic disorder. It is a form of Mucopolysaccharidosis (MPS IVA) and is characterized by significant bone and joint disease, as well as numerous other symptoms throughout the body. Patients suffering from Morquio A Syndrome lack an enzyme in their blood that breaks down cellular waste in the body. This waste builds up and stores in the bones, tissues, organs, and muscles, and leads to some of the symptoms described below.
Despite, that, Brush is an active and much sought-after stage attraction who is a songwriter and marvellously accomplished acoustic guitar picker with a versatile mien that encompasses Blues, Roots and Country.
Brush has released a dozen albums of his original material, a mix of
sentimental tunes, humour, powerful and often poignant observations about life from his unique point of view and inspiring anthem-like ballads. His talent has made him many fans and in October he was lauded by Prime Minister Justin Trudeau after the two were introduced at a community event.
In 2008 Brush wrote a book, Krooked Cowboy, that was published along with release of what so far has been his most recent album but he has been working on a new release this year while playing more electric guitar and lately experimenting with Jazz, he told a Burlington reporter recently.
Because he’s busy and lives in Burlington, where public transit, let alone transit for the disabled, is not exactly a practical transportation option, he needs special wheels to get around. The van he’s been using is just about done and he’s been endeavouring for the last little while to raise funds for a new one.
WHAT CAUSES MORQUIO A SYNDROME?
Morquio A Syndrome is an inherited genetic disorder caused by a deficiency of an enzyme called N-acetylgalactosamine-6 sulfatase, or GALNS. Deficiency of this enzyme causes cellular waste to build up in the body and progressively store in the bones, tissues, organs, and muscles. Morquio A Syndrome is estimated to occur in 1 in 200,00 to 300,000 live births, with 90-100 estimated cases in Canada.