Emily was diagnosed with Schimke Immuno-osseous Dysplasia—a complicated medical term for one of the rarest forms of Dwarfism. Unlike most dwarfs you’ve seen, Emily is proportioned and stands 41 inches tall. Her condition is so rare that Emily is only one of six others in the United States who have been diagnosed with Schimke, and one of only 45 across the world. It’s believed that many more childr
en may have Schimke but the journey to a diagnosis can take years and most lose their battle from the symptoms of kidney failure or stroke before they’ve been accurately diagnosed.Doctors in British Columbia, who have worked on their own time, money and resources, have cloned another patient’s genes and believe that Ataluren (originally developed for those with Muscular Dystrophy) could bypass the gene mutation for children with Schimke. This is a shovel-ready project that offers extraordinary promise — Little Giants Foundation (www.LittleGiantsFoundation.org & www.littlegiantsfoundation.blogspot.com) were formed to share this advancement with others and to assist with the $3 million dollars needed to complete the research and testing. Our Main Goals
• To become a voice for those diagnosed with rare forms of Dwarfisms
• To support research, studies and experimental testing that offer life-saving hope
• To connect those who are affected with rare forms of Dwarfisms with each other
and to provide vital information and news that can strengthen our fight
• To enhance awareness of rare Dwarfism among the public, private, government,
and health insurance parties
• To educate the medical community about Schimke and other rare forms of
Dwarfisms to reduce the incident of misdiagnosis
Little Giants Foundation is a component fund of Gretna Community Foundation an Affiliated Fund of the Midlands Community Foundation, a Nebraska 501(c)(3) Non Profit Corporation, whose tax ID is 51-0191738.
