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Mitchell Cupps’ family fights for his life.
Their story could be a movie script.
A son whose medical symptoms baffled physicians: perfectly proportioned but severely small. At almost 5 years of age, Mitchell Cupps stands only 27 1/2 inches tall and weighs just 18 pounds. One of only four children in the United States diagnosed with Schimke immuno-osseous dysplasia, or SIOD, he and his parents, Michelle and Troy Cupps, are in a desperate fight to save his life.
Up until January, the Cupps thought Mitchell was a rare dwarf who was not fully diagnosed but expected to live until at least age 70. But then the signs of kidney failure and other revealing characteristics set in, enabling doctors to diagnose Mitchell with SIOD. The symptoms of SIOD are often deadly and include hip dysplasia, low immune system, migraines, temporary paralysis and stroke.
The average life expectancy for SIOD patients is between eight and 14 years — a startling prognosis that propelled Troy and Michelle to become voices for SIOD, forming the Little Giants Foundation in July 2009.
“We quickly realized that there could be many more children who have SIOD but haven’t been accurately diagnosed,” Michelle Cupps says. “Our mission goes beyond trying to save our child’s life. We believe that Little Giants Foundation can become the springboard for information, knowledge and action that leads to a cure for this and other rare forms of dwarfism.”
Scientists have identified Mitchell as the ideal candidate for testing Ataluren, a drug originally developed for patients with muscular dystrophy. Approximately $3 million is needed to fund the testing, which could potentially save Mitchell’s life and that of others with SIOD.
Since forming the Little Giants Foundation, the Cupps have raised nearly $20,000 through community fund-raisers. Mayor Kathy Taylor has agreed to declare a date in the near future as the “Mitchell Cupps/Tulsa’s Little Giant Day,” and Gov. Brad Henry has agreed to do the same on a statewide level. Yet the Cupps know time is of the essence, and they are looking for a celebrity to help bring awareness to the cause.
“We need to look for something big and do it now,” Troy Cupps says, “or we are going to run out of time.”
For more information, visit www.littlegiantsfoundation.org.
