SuperClark140

Nickname of Clark Nathan Harris, a remarkable baby boy living in Kitchener, Ontario Canada. Clark was born in 2013 with an EXTREMELY rare genetic brain disorder called Pontocerebellar Hypoplasia Type 2 (PCH2), a condition so rare that most doctors and neurologists, although able to make a diagnosis, have not worked with it and there is no known treatment. Prognosis for PCH2 is largely unknown, yet grim? Clark may never walk, or talk, or even survive beyond his childhood. This disease results in global development delays, impedes his motor control and causes severe physical and intellectual disability. That said, Clark is showing great strength -- and even development beyond what is expected of his condition -- by reaching small yet significant milestones that he technically is not 'supposed to'. This makes Clark Harris a 'superhero' in his own right and champion of hope for all children and families struggling with PCH2 and other debilitating rare diseases. This hashtag has been created alongside a a growing online presence for Clark via Twitter and Facebook, to primarily help with: - raising awareness about him and his family, both online and through various local, national and international media (the Harris' are one of only about 5 families in all of Canada coping with PCH2); - reaching out to philanthropists and community to raise the much needed funds to cover Clark's continuing and costly care; and - bringing attention to Clark's condition of PCH2 (and Rare Genetic Diseases in general) and advocating better information access and further research into these largely unacknowledged disorders.

Acronym for an extremely rare genetic brain disorder called Pontocerebellar Hypoplasia (PCH), Type 2, one of six forms of PCH described by researchers. PCH is caused by mutations in several different genes, and identified by abnormal brain development (specifically the cerebellum and pons), global delays in development, problems with motor control, and intellectual disabilities. Many children with pontocerebellar hypoplasia live only into infancy or childhood, although some affected individuals have lived into adulthood. 'Major features of Pontocerebellar Hypoplasia type 2 (PCH2) include a lack of voluntary motor skills (such as grasping objects, sitting, or walking), problems with swallowing (dysphagia), and an absence of speech and communication. Affected children typically develop jitteriness (generalized clonus), muscle spasms, and other movement abnormalities. Many also have impaired vision, seizures, and microcephaly that becomes more pronounced as the body grows.' (http://***